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GenerationsThe Official Publication of the National Ataxia Foundation

Volume 36, Number 4Winter 2008-09

The National Ataxia Foundation Board ofDirectors and the National Ataxia FoundationSeattle Area Support Group along with theBritish Columbia Ataxia Society would like toinvite you to the 52nd Annual MembershipMeeting.

This is the first internationally co-hostedannual meeting. NAF commends the BritishColumbia Ataxia Society and the Seattle AreaAtaxia Support Group for their coordinatedefforts in planning this conference. Please join usat the Doubletree Airport Hotel in Seattle, WA,the heart of the Pacific Northwest, to learn,share, network, have fun, and enjoy the sites.

The 2009 NAF Annual Membership Meetingwill continue to focus on bringing together NAFmembers and their families to meet and learnfrom world leading ataxia researchers and neu-rologists but also to build new friendships andreunite with old friends. Whether this is yourfirst meeting or your 52nd, the 2009 AnnualMembership Meeting will be filled with educa-tion, celebration, sharing, and caring!

The Annual Meeting Registration Form canbe found in this issue of Generations and on our

Web site in January 2009. You may also viewthe latest information available about the AnnualMembership Meeting on our Web site atwww.ataxia.org. The Annual Membership Meet-ing Program you receive at the conference willbe the most updated conference schedule. Pleaseuse your Meeting Program for room assignmentsand times. Due to unforeseen circumstances themeeting schedule may change. We apologize inadvance if that is the case. Changes will be postedin the Registration room and announced at themeeting. For that reason we encourage attendeesto plan to attend the entire meeting to ensurethat you will not miss a presentation.

Program OverviewThursday, March 19Ride Ataxia III Arrival – 2:00 p.m. Please join

us in welcoming the riders participating in RideAtaxia III. Ride Ataxia has been instrumental inraising ataxia awareness and funds for FRDAresearch. Visit rideataxia.blogspot.com for thelatest Ride Ataxia III information.

Continued on page 3

TheNational Ataxia Foundation52ndAnnualMembershipMeeting

Seattle,Washington – March 20-22, 2009

“Climb EveryMountain”

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Generations Winter 2008-09

Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN.Copyright 2008 by the National Ataxia Foundation, Inc. All rights reserved.

We ask that other publications contact us for permission to reprint any article from Generations.

Generations Staff:Julie Braun .....................................Financial DirectorSue Hagen...........................Patient Services DirectorMike Parent ...................................Executive DirectorLori Shogren ...................Special Projects CoordinatorLiz Werner ................................Outreach Coordinator

Design, Production and Printing..............Leader Printing

DisclaimerThe National Ataxia Foundation does not endorse products, services, or manufacturers. Those that arementioned inGenerations are included only for your information. The NAF assumes no liability whatsoever forthe use or contents of any product or service mentioned in the newsletter.

Please direct correspondence to:National Ataxia Foundation2600 Fernbrook Lane, Suite 119Minneapolis, MN 55447-4752

Phone: (763) 553-0020FAX: (763) 553-0167Internet: www.ataxia.orgE-mail: [email protected]

Table of ContentsAnnual Membership Meeting

News & Notes ............................................... 8Agenda ....................................................... 23Registration Forms ...................................... 25

Research

NAF Young Investigator Receives Fundingfrom the National Institutes of Health............ 29

Articles

NAF Represented atPatient Advocacy Meeting ............................... 9NAF Attends Genetic Counselor Meeting ......... 9From the Desk of the Executive Director ........ 10Generations – A Publicationfor NAF Members ......................................... 11A Celebration of InternationalAtaxia Awareness Day ................................. 12E-mail Addresses Wanted! ........................... 16NAF Exhibits at Abilities Expos ..................... 19Use iSearchiGive and NAF Benefits .............. 19Mystery Diagnosis ....................................... 19NAF Earns 4-Star Rating fromCharity Navigator for 5th Straight Year .......... 20Life Planning – The Final Componentin the Estate Planning Process ..................... 27Fundraising with the Family .......................... 32

Articles (cont.)

Matching Gifts ............................................ 32GoodSearch ................................................ 32SCA4 Research .......................................... 35Getting Married? ......................................... 35Remembering NAF in Your Will ..................... 36Subjects Sought for Research ...................... 36Individuals with SCA6 Needed ..................... 36Second Annual Rare Disease Day ................ 36Vehicle Donation ......................................... 43NAF Exhibits at Society forNeuroscience Annual Meeting ...................... 46CFC Number ............................................... 47

Membership Topics

Chapter and Support Group News ................ 33NAF Merchandise ........................................ 37NAF Chapters, Support Groupsand Ambassadors Listings ........................... 38Calendar of Events ...................................... 44Memorials and In Your Honor ....................... 47

Personal Stories & Poems

A Journey of Hope ....................................... 20Making Music ............................................. 21Let’s Reminisce .......................................... 28David’s Story .............................................. 30

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Leadership Meeting – 3:30-6:00 p.m.(new time)This meeting is designed to provide informationand support to National Ataxia Foundation’sChapter Presidents, Support Group Leaders andAmbassadors. The meeting is a valuable resourcefor volunteers who serve in these appreciatedpositions. If you are a leader who is unable toattend the meeting, please indicate one repre-sentative who is willing to attend in yourplace. Meeting attendees will have questions andconcerns addressed, learn from peers and profes-sionals and have the opportunity to meet othersand exchange tips and ideas.

If you are interested in becoming a groupleader or ambassador, please contact Lori [email protected] prior to the meeting.Internet Group – 7 p.m. This is your opportu-

nity to meet some of those internet friends thatyou have met on the NAF chat room, NAFBulletin Board, Internaf, Tricks of the Trade,Ataxia Forum, Ataxia Chat 2002, FAPG,u_r_notalone, and My Space NAF.

Friday, March 20General Sessions – The General Sessions will

start on Friday morning in the Grand Ballroom.General Sessions are large group presentations,typically with a medical or research focus. Thisyear the General Sessions will incorporate thepractical topics in addition to the research andmedical topics. Many of the world’s leadingataxia researchers and clinicians, along with otherataxia experts, will be presenting the latestresearch and additional information. A half-hourQuestion and Answer session will follow themorning General Sessions featuring a panel ofthe speakers that presented.Nintendo Wii Demonstration – A demonstra-

tion of the physical therapy aspects of theNintendo Wii game system will be available inthe Olympic 1 room Friday and Saturday from10 a.m. to 2 p.m. You can try out the system

for yourself and ask questions about it. Thissystem is being used in many nursing homes andindividual homes around the world by thosewith limited movement abilities who want tostay active. The demonstration is open to all ages.Persons under the age of 12 must be accompa-nied by a parent or guardian who is age 18 orolder. This is a demonstration only. Please limityour time on the system so that everyone inter-ested in this product is provided the opportunityto try it.Birds of a Feather – On Friday from 2-5 p.m.

individuals will be able to attend small groupsessions. Groups will be divided by differenttypes of ataxia or different roles that attendees areexperiencing, i.e. caregiver, spouse, or parent.This is a tremendous opportunity to meet otherswho share a similar situation or the same ataxiadiagnosis. Previous attendees have said thesegroup sessions were the most valuable segmentof the annual membership meeting where theywere able to make friends for a lifetime. Medicalprofessionals will be circulating between groupsand available for questions.Friday Night Reception – Please join us for an

hors d’oeuvres reception in the Grand Ballroom.All registered meeting attendees are welcome toattend and admittance to this event is includedwith your registration.

Saturday, March 21General Sessions – Saturday morning and after-

noon continues with General Sessions in theGrand Ballroom. A half-hour Question andAnswer session will follow the morning andafternoon General Sessions with a panel of thespeakers that presented.Church Services – Both Catholic and non-

denominational church services will be held onSaturday at 6 p.m.Silent Auction – The Silent Auction is a fun

way to raise funds for the continuing importantwork of the Foundation. This long-standing

Winter 2008-09 Generations

2009 Annual Membership MeetingContinued from page 1

Continued on page 4


NAF tradition begins on Saturday afternoonwith the final bidding ending at 7:30 p.m. Theauction items range from something that repre-sents your state or country, art work, sportsmemorabilia, theme baskets, hand-crafted items,hotel stays, and weekend getaways. Bring anitem to donate and then have fun bidding on theitems of your choice. Good luck!Saturday Evening Banquet – The Saturday

Evening Banquet will begin at 7 p.m. in theGrand Ballroom. Please get your tickets – whichare included in your registration fee – ahead oftime. You must reserve seating for the banquet inadvance. The banquet will include a plateddinner.

Sunday, March 22General Sessions – Sunday wraps up the 2009

Annual Membership Meeting with the finalround of General Sessions, including the latestin clinical trials, in the Grand Ballroom followedby a Question and Answer Session. Don’t missout on these important sessions.

Additional InformationConference Registration – Please complete and

return the registration forms in the center of thisissue of Generations to NAF by February 15,2009. Additional registration forms are availableon our Web site. Please fill out the registrationform completely, as we need all the informationto finalize plans. If you are bringing an attendant,please register together on the same page. Eachperson that is planning on attending daily ses-sions, the reception, or banquet needs to register.Event entry will not be allowed without theproper registered name tags.Registration Fees – Being a member of the

National Ataxia Foundation has its benefits –one being a lower registration fee for the AnnualMembership Meetings. If you are not currentlya member of the Foundation or if your mem-bership renewal is coming soon or if you are

uncertain of your membership status, pleaseconsider this a great opportunity to call the officeat (763) 553-0020 or go online atwww.ataxia.orgto become a member or renew your member-ship. This will prevent unnecessary extra fees orerrors in your membership status when youregister for the Annual Membership Meeting inJanuary, 2009. Thank you for taking time torenew or become a member of the NationalAtaxia Foundation. Your attention to this detailis greatly appreciated!Video Taping – Video taping of the NAF

Annual Membership Meeting General Session isprohibited without prior written consent fromthe National Ataxia Foundation.Photo Waiver – By attending the 2009 NAF

Annual Membership Meeting you give yourconsent, unless you notify us otherwise, to useyour image captured during the conferencethrough video, photographs, or digital imagery,to be used by the National Ataxia Foundation inpromotional materials, publications, and Website, and waive any and all rights to these images.Fragrance Free – There are many people who

experience unpleasant to severe effects fromscented products, such as perfumes and colognes.For the comfort of our attendees we ask that allparticipants refrain from wearing perfume,cologne, and other fragrances, and use unscentedpersonal care products in order to promote afragrance-free environment.About Seattle – Christened “The Emerald

City,” Seattle is one of the most livable cities inthe world. It actually receives less annual rainfall(36 inches) than New York City and Atlanta.Surrounded by lakes, rivers, Puget Sound, andmountains, Seattle is a recreation enthusiast’sdream.

The greater Seattle area is home to 2.8 millionpeople. Microsoft, Nordstrom and Starbucks arebased here. Seattle is also known as the birthplaceof the crazes for grunge rock and espressocoffee. This area is the home of baseball’s EdgarMartinez; glass art’s Dale Chihuly; musicians �




Pearl Jam, Soundgarden, Queensryche, Annand Nancy Wilson of Heart and Kenny G.; soft-ware giant Bill Gates; maestro Gerard Schwartz;actor Tom Skerritt; and writers Ann Rule,Robert Fulghum, and Tom Robbins.

For more in depth information about theSeattle area in order to plan your trip, please visitwww.visitseattle.org or www.seattlesouthside.com.About the Hotel – The Doubletree Hotel

Seattle Airport is the official conference hotel ofthe 2009 NAF Annual Membership Meeting.The Doubletree Hotel Seattle Airport is locatednext to SeaTac International Airport and 20minutes from Downtown Seattle at 18740International Blvd. in Seattle, WA.

The Doubletree Hotel is a resort-like settingwith a full slate of amenities such as complimen-tary shuttle service to Westfield SouthcenterMall and 24-hour airport shuttle service. Ashuttle schedule to the Southfield Mall will beincluded in your pre-registration packet. If youneed an ADA shuttle from the airport pleasecontact the hotel directly at (206) 246-8600before you arrive to arrange transportation.There are two Doubletree Hotels in this area.Please make sure you take the correct airportshuttle to the Doubletree Hotel Seattle Airport.Do not take the Double Hotel Seattle AirportGuest Suites shuttle.

Complimentary wireless internet access isavailable in all public areas and all guest roomsinclude a coffeemaker, a copy of USA Today,and a balcony. Please visit the Doubletree HotelSeattle Airport’s Web site for more informationat http://doubletree1.hilton.com/en_US/dt/hotel/CTAC-DT-Doubletree-Hotel-Seattle-Airport-Washington/index.do.

Some guest rooms at this hotel can be locatedup to a quarter-mile away from the lobby andmeeting rooms. Please contact the front desk fortransportation from your room to the main hotelentrance if your room is located too far for you towalk or transport yourself.

Self-parking and valet parking are available.

Self-parking overnight is $16 per night. Valetparking is $20 per night. Self-parking for day useis $10 per day. NAF has a special group parkingrate of $8 for self-parking overnight and day use.NAF does not have a group rate for valet parking.To receive the group parking rate you will needto bring the parking ticket that you received atthe parking gate upon entering the hotel parkinglot to NAF’s registration room, which is North-west 1, for validation.Reservations – Guest rooms are available for a

special group rate of $139 per night. Please besure to make your reservations by February 16,2009 in order to secure the special group rate.

To book your stay online go to http://doubletree.hilton.com/en/dt/groups/personalized/CTAC-DT-NAF-20090316/index.jhtml or, if you preferto make your reservations by phone, please calltoll-free 1-800-222-TREE and ask for theNational Ataxia Foundation group rate. Ourgroup code is NAF. If you experience problemsaccessing Doubletree’s Online NAF group reser-vation page, please contact the NAF office [email protected].

There were a limited number of ADA roomsavailable on a first-come, first-serve basis in ourgroup block. All of these rooms are now reservedat the Doubletree Hotel Airport. We still dohave a small block of ADA rooms at the Hilton


Continued on page 6

The Doubletree Hotel Seattle Airport



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Seattle Airport. Scheduled transportation will beprovided for NAF conference attendees to andfrom the Hilton and the Doubletree. To reservean ADA room at the Hilton Seattle Airportplease contact the National Ataxia Foundation at(763) 553-0020. If you are interested in puttingyour name on our ADA room waiting list pleasecontact the National Ataxia Foundation at (763)553-0020. Shower chairs, tub bars, and toiletframes will be available on a first-come, first-serve basis by contacting the Doubletree Hoteland Hilton Hotel front Desk upon check in.

Transportation and Getting ThereNAF is not responsible for transportation to

and from the hotel. The following may be usedas a helpful guide for your convenience. At theSeaTac International Airport the General Infor-mation Desk is located across from baggage claimcarrousel 12.Complimentary Lift Equipped Shuttle – The

Doubletree Hotel Seattle Airport offers compli-mentary lift equipped shuttle service to WestfieldSouthcenter Mall and 24-hour airport shuttleservice. A shuttle schedule to the mall will be in-cluded in your pre-registration packet. Once youarrive at the airport you can get to the shuttlepickup area by taking the elevator located in thebaggage claim area up one floor to the Skybridge(also labeled as Parking on the elevator). TheSkybridge will take you to the Parking Garage.In the Parking Garage take the elevator down tothe street level to the shuttle pick up area.

There are two Doubletree Hotels in this area.Please make sure you take the correct airportshuttle to the Doubletree Hotel Seattle Airport.Do not take the Doubletree Hotel SeattleAirportGuest Suites shuttle. If you need an ADAshuttle from the airport please contact the hoteldirectly at (206) 246-8600 before you arrive toarrange transportation. This shuttle can transporttwo wheelchairs at a time.

Taxis – STITA Taxi Service and Yellow Cabhave lift-equipped vehicles. Reservations shouldbe made in advance. STITA Taxi Service can bereached at (206) 246-9999. Yellow Cab can bereached at (206) 622-6500.Gray Line of Seattle – Gray Line has one

charter coach that accommodates up to fourwheelchairs and several small coaches thataccommodate up to two wheelchairs. Chartersmust be reserved in advance. Call (206) 626-6080 or visit www.graylineofseattle.com for moreinformation. Step-on guide service and toursavailable. Ask for Judy Sprute.Metro Bus – Route 194 is closest to the hotel.

The buses can accommodate up to two wheel-chairs at a time. Each bus has a lift. The buses runevery 30 minutes starting at 6:19 a.m. and withthe last return at 8:50 p.m. 2008 fares are $1.50per person and you must have exact change. Formore information, call (206) 553-3000 or visithttp://tripplanner.metrokc.gov/cgi-bin/itin_page.pl?resptype=U.Parking – Based on Washington state law, the

City of Seattle allows on-street parking at no costto holders of Disabled Parking Permits, whichare issued by the State of Washington. The StateDepartment of Licensing can issue disabled park-ing placards (either red-temporary or blue-permanent) and/or disabled parking licenseplates. Call the Washington State DisabledPermit Program at (360) 902-3770, option 5.Metro ACCESS Paratransit Service – You must

be found eligible for the ADA ParatransitProgram before you can request rides. For moreinformation, call Metro’s Accessible Servicesoffice during regular weekday business hours at(206) 263-3113. If you have to dial “1” first toreach that number, call 1-866-205-5001. TTYusers should call the statewide relay at 711. Youcan also reach Accessible Services by fax at(206) 263-3101 or by e-mail at [email protected]. Visit http://transit.metrokc.gov/tops/accessible/accessvan.html for information.




SEATTLE

Dining OptionsThe following is a list of dining options inside of andwithin two miles of the AMM hotel, the DoubletreeHotel Seattle Airport. The following may be used asa helpful guide for your convenience:

Inside the Doubletree Hotel Seattle Airport:

Taco Bell – 0.05 miles18812 International Blvd.Seatac, WA 98188

Denny’s – 0.1 miles18623 International Blvd.Seatac, WA 98198

Sharps Roaster & AleHouse – 0.2 miles18427 International Blvd.Seatac, WA 98188

Thirteen CoinsRestaurant – 0.5 miles18000 International Blvd.Seatac, WA 98188

Spencer’s for Steak &Chops – 0.7 miles17620 International Blvd.Seatac, WA 98188

Denny’s – 0.9 miles17206 International Blvd.Seatac, WA 98188

IHOP – 1.2 miles20402 International Blvd.Seatac, WA 98198

Subway – 1.8 miles21425 International Blvd.Des Moines, WA 98198

SeaPorts Lounge11:00 a.m.–1:30 a.m.Sandwiches, pizza andnachos

Maxi’s LoungeFriday & Saturday only

Coffee Garden Restaurant5:00 a.m.–10:00 p.m.Casual American diningfor breakfast, lunch,dinner and express buffet

Room Service6:00 a.m.– 10 p.m.Full menu10:00 p.m.–12:00 a.m.Limited menu

Latte Stand5:00 a.m.– 2:00 p.m.Espresso, coffee, juice,soft drinks, muffins andcookies

Within two miles of the hotel:

Wheelchair & Scooter RentalsThe following may be used as a helpful guide for yourconvenience:

Access Mobility [email protected] Hwy. 99Everett, WA 98204(425) 353-6563Fax: (425) 355-6159Toll-free: 1-800-854-4176

[email protected]: 1-888-441-7575

Absolute Mobility Centerabsolutemobilitycent.reachlocal.com(425) 318-1390Fax: (360) 668-1543Toll-free: 1-888-822-9407

Personal Care AttendantsPlease note that NAF is unable to provide attendantcare services. Due to liabilities and health concerns,NAF and hotel employees are not able to provide thisservice.All PCAs must be registered to attend the annualmembership meeting. A PCA will not be required to bea NAF member to receive the reduced NAF membermeeting fee. PCAs will be able to attend all sessions,including the Friday reception and Saturday banquet.This applies to family members/friends or contractedPCAs or other persons needed to provide services.Please do not attend without making arrangements foran attendant if you are need of one. The following maybe used as a helpful guide for your convenience:

Senior Services Senior Information & Assistance2208 Second Ave., Ste. 100Seattle, WA 98121(206) 448-3110 Fax: (206)448-5748Toll-free: 1-888-435-3377 (TTY) 206-448-5025www.seniorservices.org [email protected]

Wheelchair Repair CompaniesThe following may be used as a helpful guide for yourconvenience:

Olympic Pharmacy,Gig Harbor4700 Pt. Fosdick Dr. NWGig Harbor, WA 98335(253) 858-9941

Kirks Medical7131 Martin Way EOlympia, WA 98516(360) 456-5475

Pharmacy OptionsThe following may be used as a helpful guide for yourconvenience (distance from hotel indicated):

Walgreen’s – 2.99 milesPharmacy is open 24x714656 Ambaum Blvd. SWBurien, WA 98166(206) 901-1774

Longs Drugs – 2.13 miles15716 First Ave. S.Burien, WA 98148(206) 243-4600

Bartell Drugs – 2.19 milesPharmacy is open from9:00 a.m.– 9:00 p.m.14227 Tukwila Int’l Blvd.Tukwila, WA 98168(206) 431-9639

SERVICES & RESOURCES



Volunteers NeededVolunteers donating their time contribute

greatly to the success of each National AtaxiaFoundation Annual Membership Meeting.

To volunteer at the 2009 AMM, please con-tact Milly Lewendon, Seattle Area Support GroupLeader, at (425) 823 -6239 or e-mail [email protected].

Exhibitors WantedHave you used a product or service that has

been helpful as it relates to ataxia? The NationalAtaxia Foundation is currently exploring variousvendors to be exhibitors at the Annual Mem-bership Meeting in Seattle in March 2009.

If you have found a product or service to bebeneficial in your daily life, please forward thename of the company to the NAF office and wewill contact them with the details to become apossible exhibitor.

Please call Liz at (763) 553-0020 or [email protected]. Thank you for your help.

Reminder: AMM Reception & BanquetIncluded in Your Registration Fee

Please note that the registration fee to attendthe National Ataxia Foundation Annual Mem-bership Meeting includes the reception and ban-quet. There is no separate fee to attend thesecelebratory events. We hope to see you allthere!

Nurse(s) NeededOne or more registered nurses are needed

on-site for the duration of the National AtaxiaFoundation 2009 Annual Membership Meetingin Seattle, WA, March 20-22, 2009.

To volunteer or for more information, pleasecontact Lori at [email protected] or call (763)553-0020.

Going Once, Going Twice, Sold!Help make the 2009 National Ataxia Founda-

tion Annual Membership Meeting Silent Auctionthe biggest yet!

Proceeds from the silent auction benefit thosewith ataxia and their families, so get your itemsready to go to Seattle!

Funding for Travel Grants NeededEach year the National Ataxia Foundation

offers a limited number of travel grants to helppersons with ataxia who have financial re-straints attend the NAF Annual MembershipMeeting. These travel grants provide personswith ataxia the opportunity to attend these im-portant conferences to learn the latest informa-tion on ataxia research, to attend variouspresentations on topics relating to ataxia, to par-ticipate in “Birds of a Feather” sessions, andperhaps, most importantly, to meet people whoshare the same issues and concerns.

Over the years these travel grants have beenmade possible through the generosity of indi-vidual donors and families who know the valueof these meetings. Please help others attendthe 2009 NAF Annual Membership Meeting bymaking a tax-deductible donation today. Youmay go online to make your gift or you can mailyour donations to NAF and write “Travel Grant”on your check memo.

We are deeply grateful to those who havegiven in the past for this fund; their gifts havetruly touched the lives of persons with ataxia.Please help others and give to the 2009 NAFTravel Grant Fund today. Thank you.

Apply for a Travel GrantYouth and adult travel grants are available to

help cover some financial expenses involvedwith attending the National Ataxia FoundationAnnual Membership Meeting. For more infor-mation visit the NAF Web site, www.ataxia.org.

Questions and AnswersPrevious Generations Annual Membership

Meeting preview issues have included a full-page form to be used by readers in submittingquestions to be asked in question-and-answersessions at the AMM.

We would like to continue this tradition ofallowing members who are unable to attend themeeting the opportunity to ask questions, butin order to save space, we ask that you e-mailquestions to Sue at [email protected] or call(763) 553-0020. Questions and answers maybe published in a future issue of Generations.

Annual Meeting News & Notes


The National Ataxia Foundation was one ofover 65 exhibitors at the 27th National Society ofGenetic Counselors’ (NSGC) Annual EducationConference in Los Angeles, CA in October. TheNSGC exists to advance the roles of geneticcounselors in heath care by fostering education,research and public policy to ensure the avail-ability of quality genetic services.

This meeting was attended by over 1,000genetic counselors, students and others in thefield of testing for genetic disorders.

NAF’s presence gave these attendees theopportunity to learn about the resources thatNAF provides to those diagnosed with ataxia.Many counselors stopped by the booth to takeNAF literature with them to provide for theirpatients. There was a great deal of interest in allthe hereditary types of ataxia.

We are grateful to Dawn Dudley from the LosAngeles Ataxia Support Group for assisting withstaffing the booth.


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NAF Represented atPatient AdvocacyMeetingBy Sue Hagen, Patient Services Director

In 2003, the National Institutes of Healthestablished the Rare Diseases Clinical ResearchNetwork (RDCRN) to facilitate increased col-laboration and data sharing between investigatorsand patient advocacy groups to encourage devel-opment of new approaches for the diagnosis,prevention and treatment of rare diseases. Withinthe RDCRN is the Consortium for ClinicalInvestigations of Neurological Channelopathies(CINCH), of which NAF is a member. Episodicataxias are a rare form of neurologic chan-nelopathies and CINCH is a collaborative effortof doctors, patient organizations and federalhealth agencies who want to learn more aboutthese diseases so that they can offer bettertreatments to patients.

In October, the Office of Rare Disordershosted a meeting of the Patient AdvocacyOrganizations that represent rare diseases withinthe RDCRN. At the meeting, Stephen Groft,Director of the NIH Office of Rare Disorders

expressed the need to move from a research-basedmindset to a product development mentalityfor treatments of rare disorders. He encouragedpatient advocacy groups to become activelyinvolved in increasing participation in clinicaltrials by those affected by rare disorders. LindaUlrich, MD, Medical Officer of the Office ofOrphan Products Development presented theincentives that are available for product develop-ment in rare diseases. Individual organizationsshared information on their successful endeavorsin providing services to their patient population.

The daylong meeting was valuable as a net-working opportunity and educational time. Itbecame very apparent that there is a concertedeffort to encourage product development andresearch that will improve the lives of those withrare diseases.

Those with episodic ataxia are encouragedto join the registry by logging onto http://rarediseasesnetwork.epi.usf.edu/cinch/index.htm.

NAF Attends Genetic Counselor MeetingBy Sue Hagen, Patient Services Director



I am pleased to report that the National AtaxiaFoundation received its fifth consecutive 4-Starrating out of a possible four stars from CharityNavigator, America’s leading and largest evalua-tor of charities. The 4-Star rating is given to non-profit organizations that show sound fiscalmanagement and for their ability to efficientlymanage and grow their finances.

Charity Navigator recently wrote, “Only 3%of the charities we’ve rated have received at leastfive consecutive 4-Star evaluations, indicatingthat the National Ataxia Founda-tion consistently executes itsmission in a fiscally responsibleway, and outperforms most char-ities in America. This ‘excep-tional’ designation from CharityNavigator differentiates NationalAtaxia Foundation from its peersand demonstrates to the public itis worthy of their trust.”

As of this writing, the NationalAtaxia Foundation is reviewingnearly 50 quality ataxia researchproposals from 15 countries. Themost promising of these studies will be fundedin late December 2008 for fiscal year 2009. Asummary of the funded studies for FY 2009 willbe published in the next issue ofGenerations.

The funding for these important ataxiaresearch studies was made possible through thegenerosity of our donors who supported the2008 NAF Annual Ataxia Research Drive. Weare also grateful to the individuals, families, chap-ters, and support groups who conducted variousevents throughout the year, our corporate andfoundation friends, workplace givers who gavethrough their local united ways and combinedfederal campaigns, employer matching gifts,NAF pledgers, and others. We are truly thankfulfor your gifts and are honored by your trust insupporting these vital ataxia research studies.

Together, we are making a profound impact onworld-wide ataxia research.

Plans are underway for the National AtaxiaFoundation’s 52nd Annual Membership Meet-ing, “Climb Every Mountain.” The Seattle AreaAtaxia Support Group and the British ColumbiaAtaxia Society will be hosting the meeting. Thisis the first internationally co-hosted annualmembership meeting, and will be held March20-22 at the Doubletree Hotel Seattle Airportin Seattle, Washington.

The General Sessions will con-tinue to feature world-leadingataxia researchers presenting theirlatest research findings, but thisyear we will also offer a large arrayof other topics of interest tothe ataxia community. You willfind out the latest information onclinical trials being conducted inFriedreich’s ataxia and SCA1,cutting-edge research on RNAi,nutrition, speech and swallowing,genetics and genetic testing,financial planning, and so much

more. By popular demand, “Birds of a Feather”will again be offered as well as the InternetGroup get together. There will be fun festivities,including the Friday Night Reception and theSaturday Night Banquet. You do not want tomiss this annual membership meeting.

NAF is currently working on a new web-baseddatabase system, which will be launched in thefirst quarter of 2009. Once available, memberswill be able to go online to update their contactinformation, add their e-mail address to receiveNAF E-Blasts, and review their giving history.This new system will offer NAF the ability to bemore effective and efficient in providing impor-tant programs and services to ataxia families.

NAF chapters, support groups, and ambassa-dors are working hard to provide local ataxia �

From theDeskof theExecutive Director

Michael Parent



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families with information, support and network-ing. Many celebrated International AtaxiaAwareness Day (IAAD) in their local communi-ties through events, picnics, and fundraisers. Anumber of support groups hosted NAF Walk ’n’Roll events that raised ataxia awareness andsignificant funds to help support the importantwork of the Foundation. There are a number of

additional support groups who have expressed aninterest in conducting a Walk ’n’ Roll event nextyear for IAAD. Thank you to all of our wonder-ful volunteers and local ataxia leaders who giveso much. Your service to local ataxia families aregiven with great care, kindness, compassion, andunderstanding. Thank you!

See you in Seattle!

Generations – A Publicationfor NAF Members

The National Ataxia Foundation has beenproviding its members with a quality quarterlynews publication called Generations for manyyears. It is one of the many benefits of being amember of the Foundation. Generations offersmembers information on cutting-edge research,stories written by and for ataxia families, articleson timely topics affecting the ataxia community,current ataxia activities and events in your area,and much more.

As the costs of postage and printing continueto go higher, so does the cost of publishingand distributing Generations. Therefore, NAF isno longer able to mail Generations to non-members. To continue to receive Generations,please make sure that your paid NAF member-ship is current. If your membership has recently

expired or will soon expire, please renew yourmembership today.

For your convenience, in this issue you willfind an NAF membership envelope inserted inthe middle section of the magazine. To makesure that you receive uninterrupted issues ofGenerations, please complete the form withyour payment and mail it to the National AtaxiaFoundation. If you should have a question onyour membership status, please contact NAF [email protected] or call (763) 553-0020.

The National Ataxia Foundation is a member-ship supported, nonprofit organization estab-lished in 1957 to serve ataxia families throughresearch, education and support services. Yourmembership is important to us and we are trulygrateful for your support. Thank you!

Wishing you awonderful NewYearfilled with health,

happiness and prosperityFROM THE NAF STAFF

Julie Braun, Sue Hagen, Bridget Kissell,Michael Parent, Lori Shogren, Jan Stewart,

Brent Van Lith, and Liz Werner


Alabama Ambassador IAADNews

By Dianne Williamson

On September 25, I attended my third sessionof “Biotech 101,” a four-part series offered tothe public at HudsonAlpha Institute for Bio-technology in Huntsville, AL. This is a new,nonprofit research facility which is attractingnationally-known molecular biologists who areon the cutting edges of using personalized DNAto treat disease. The HudsonAlpha (HA) com-plex also houses 12 for-profit biotech companieswhich are partnering with HA to shorten thetime between the laboratory and “the bedside.”

One presenter for the evening was Dr. RickMyers, head of Stanford University’s genetics/genomics center, who recently moved toHuntsville to accept the position of Directorof HudsonAlpha. During his presentation, Dr.Myers mentioned he was among the firstresearchers seeking the gene for Huntington’sdisease. During a break, I introduced myself toDr. Myers, who seemed pleasantly surprised andinterested to know that the SCAs have a voicethrough a national organization (NAF) and hasrepresentatives on local levels. He related that hehas worked with Drs. Orr and Zoghbi.

As follow-up, I will be sending Dr. Myers anote, with an issue ofGenerationswhich includessomething related to Drs. Orr and Zoghbi. I leftNAF bookmarks for the event coordinator, whoagreed to distribute them among the researchersand companies at HudsonAlpha.

Chesapeake Chapter IAAD Campaign

Submitted by Carolyn Davis

On September 20, an estimated 200 peoplegathered on the Homewood Campus ofJohns Hopkins University (JHU) for the annualpotluck picnic of NAF’s Chesapeake Chapter.This event was co-sponsored by the recentlyestablished Ataxia Center at JHU and largelyplanned and carried out by their staff and studentvolunteers under the leadership of KatieMcGuire (Clinic Coordinator) and Katie Loya(Outreach Coordinator).

The theme of the picnic was “Changing OurWorld, One Step at a Time.” Optimism and agenuine camaraderie were felt as we greetedfriends, old and new, and shared ideas, strategies,and stories with each other. The picnic provideda wonderful opportunity to interact withresearchers and doctors at Johns Hopkins in acasual setting and to explore strategies some useto cope with their ataxic conditions. The chickenand drinks provided by the Chapter, and thevariety of dishes brought by the attendees, fed thecrowd well.

The picnic was part of a week-long Interna-tional Ataxia Awareness Day Campaign on theJHU campus. In addition to tables with infor-mation concerning ataxia, half a dozen stationswere set up to provide experiences to help thosenot aff licted to understand the challenges faced


Continued on page 13

A Celebration ofInternational Ataxia

Awareness DayThe ninth annual International Ataxia Awareness Day was observed on September 25. Many individuals,support groups, and ambassadors held special events to recognize the occasion.



by those with ataxia. Included throughout theday were opportunities for students and others tospeak with those aff licted with ataxia and heartheir personal stories. These activities, and thelogistics of the day, were capably overseen by atleast 50 volunteers.The Ataxia Student Ambassadors carried out

other activities on campus between September18 and September 25 (IAAD) to increase ataxiaawareness. An effective publicity item was thet-shirts designed by Zoe Geng and Brian Jung.In surveys taken before September 18, only 23%had heard of ataxia and only 16% knew what itwas. After the IAAD campaign, awareness haddoubled with 49% of those surveyed havingheard of ataxia and 32% knowing what it is. Thiswas the second Ataxia Awareness Campaignundertaken on the JHU campus, with the firstbeing early in 2008 as the Ataxia Center wasbeing established at JHU’s School of Medicine.Other IAAD activities included, through the

efforts of Bill Lee, proclamations issued by boththe State Senate and House of Representativesrecognizing September 25 as “InternationalAtaxia Awareness Day in Pennsylvania.”

Northern CaliforniaAtaxia Support Group IAADNewsBy Dawn Pollak

On Saturday, September 27, in recognition ofInternational Ataxia Awareness Day, theNorth-ern California Ataxia Support Group hostedtheir First Annual Walk ’n’ Roll for Ataxia atBaylands Park in Sunnyvale, CA. The turnout ofabout 75 participants was more than expectedand the funds raised for NAF totaled about$8,000.Participants got up early and some drove from

several hours away to meet other ataxia groupmembers for the first time and support the cause.Participants brought contributions from spon-sors proving their hard work to spread awarenessabout ataxia. The morning kicked off withregistration and a group stretch led by JennyDeRuntz and followed with a scenic one-milewalk around the perimeter of the park. Thenthere was an exciting raff le of high value prizesdonated by bay area companies and individuals.Overall, the event was a fun-filled day of

socializing, exercising and fundraising. It wasinspiring to be with a group of people gathered

IAAD CelebrationContinued from page 12

The Chesapeake Chapter’s picnic on the Homewood Campus of Johns Hopkins University


Gen_0804_13-24.qxp:Layout 1 12/16/08 11:55 AM Page 13


together to support one meaningful cause,whether they were affected directly or indirectlyby ataxia. The event was a success and will beused as a learning experience and a model forfuture fundraising events.

Seattle Ataxia Support GroupWalk ’n’ Roll

By Milly Lewendon

The Seattle Ataxia Support Group was sopleased to be involved with San Diego andNorthern California in raising awareness ofataxia and raising funds in support of individualswith ataxia and to further research.We had such a beautiful location on Alki Beach

in West Seattle for our first Walk ’n’ Roll event.As one looked east there was the beautiful Seat-tle skyline and west was the majestic Olympicmountains with the ferries going back and forthright in front of our eyes. Not a raindrop in sighteither!We had a group of over 35 participants and

volunteers who raised an impressive $7,000-plus.We had the support of two local merchants: AlkiBakery provided us with muffins and scones at

the beginning of our walk and then we finishedup at Pegasus Pizza for awards. Pegasus and theSeattle Doubletree Hotel (convention hotel)provided us with generous gift certificates. FirstBaptist Church of Kirkland provided water,volunteers, helped with clean up, and even tookphotographs.Each participant received a bag with a healthy

treat and information from Maxx Nutrition, anNAF pen, bookmark, and literature plus aWalk ’n’ Roll t-shirt.This was definitely a family affair. Our regis-

tration area had BobbieHealy, assisted by PhoebeFalk and Lila Brandt. They checked people inand gave them their walk number and “mile-stone” punch card. The actual walk started with“walkin’ music” – “Walk on By,” “These BootsWereMade ForWalkin’,” andmore provided byJohn Brandt. Indivar Falk, and Cooper Brandtcarried the banner donated by Russ Ranger.First Aid stations were supported by JanyneMoynihan and Nancy Knuckles.We posted our f lyer on the West Seattle Blog

and the following comment was noted from theblog after our walk:Thanks to the ataxia folks for raising awarenessfor this little-known aff liction. For anyone that’sever experienced it (BTW it’s a lot like MS) it’s anintense and frustrating challenge to those that �


Members of the Northern California SupportGroup enjoyed a beautiful day for their firstannual Walk ’n’ Roll for Ataxia fund-raiser

Members of the Seattle Support Group pose onthe beach after their first annual Walk ’n’ Roll



have it. I had the chance to meet the group that wasdown on Akli this morning, and wish those caringsouls the very best. I even gave them a little donationat www.ataxia.org. Thanks, WSB, for a bit of spot-light on the lesser-known causes.Comment by Westsider — September 27, 2008This comment really makes all the effort

worthwhile. We are very excited about doingthis again next year, it was so much fun and weare proud to have raised a significant amount ofsupport for NAF.

San Diego Ataxia Support GroupWalk ’n’ Roll for Ataxia

By Earl McLaughlin

The San Diego Ataxia Support Group cele-brated International Ataxia Awareness Day byholding the Second Annual Charley McLaugh-lin Walk ’n’ Roll for Ataxia, honoring Lisa Jaffe.The Walk ’n’ Roll took place on the bay-frontin beautiful downtown San Diego.Over 250 walkers and rollers helped raise

awareness of ataxia, and $25,000 for ataxiaresearch. “This was a tremendous success,” saidEarl McLaughlin, Support Group Leader andChairman of the Walk ’n’ Roll. “We ended upwith 25 percent more in donations than lastyear,” addedMcLaughlin, “which is phenomenalin this economy. We also had 25 percent moreparticipants.”Walk ’n’ Roll – San Diego was named in

memory of Charley McLaughlin, who passedaway from complications of Friedreich’s ataxia.This year’s honoree was Lisa Jaffe, an activemember of the support group and a member ofthe Walk ’n’ Roll Planning Committee.There were over 50 volunteers working at the

event. The Planning Committee members wereEarl McLaughlin, Ann Foster, Pat Ward, JaneJaffe, Joan Hay, Lisa Jaffe, June Wood, DawnBagley, Pamba Carolan, Linda Anderson, JacqueClayton,Marilyn Saunders, HaroldWard, LarryJaffe, Walter Wallenborn, Roger Wood, AlexArmenta, and Mike Slavin.

The Third Annual Charley McLaughlin Walk’n’ Roll for Ataxia will be held on Saturday,September 26, 2009.

Ataxia Student Ambassadorsat Johns Hopkins University

Provided by Katie McGuire, Clinic Coordinator,Ataxia Center at JHU School of Medicine

While an Ataxia Center was being establishedat Johns Hopkins University, students werebeing recruited as Ataxia Student Ambassadors.Students apply to be Ambassadors in order tolearnmore about ataxia and individuals who haveataxia. They are also interested in raising ataxiaawareness.To date, the Ambassadors have led the Inter-

national Ataxia Awareness Day program oncampus. They were also key volunteers at NAF’sChesapeake Chapter picnic co-sponsored by theAtaxia Center at Johns Hopkins.Dr. Sarah Ying, Assistant Professor of Neurol-

ogy andOphthalmology, has instructed them onhistory and physicals, and they are learning theirway around the hospital and outpatient center.The students have visited the home of twoindividuals with ataxia, learning how individualsmake accommodations in order to live life tothe fullest. These Ambassadors have also begun

The San Diego Support Group’s Walk ’n’ RollPlanning Committee



observing at the Ataxia Clinic.It is our hope that these experiences will cause

the Ataxia Student Ambassadors to contemplatea career in ataxia research, clinical care, or a re-lated field. We are certain that these experiences

will assure that the awareness of ataxia and theunderstanding of individuals affected will beincreased!Information on the Ataxia Center at Johns

Hopkins can be found at www.hopkinsneuro.org/ataxia or by calling Katie McGuire, ClinicCoordinator, at (410) 955-4894.

Central PennsylvaniaAmbassador Celebrates IAAD

By Bill Lee

In response to requests from newly appointedNAF Ambassador for Central Pennsylvania“Bill” Lee, unanimous resolutions were passedby both the Pennsylvania State House of Repre-sentatives and the Pennsylvania State Senate,proclaiming September 25 as Ataxia Aware-ness Day throughout the Commonwealth ofPennsylvania.

Greater Atlanta Area Support Group

By Dave Zilles

In honor of International Ataxia AwarenessDay, the Greater Atlanta Ataxia Support Groupmet in the Governor Sonny Perdue’s Office tohave a Proclamation signed naming September25 International Ataxia Awareness Day inGeorgia.This is the sixth year we have received such a

proclamation.

On Sunday, October 5, we held our annualIAADPicnic at Lake Lanier on a beautiful sunnyday and feasted on hot dogs and hamburgers.Wehad 22 people attend.In addition to the state proclamation, member

Paul Aust also had local proclamations signedin his community to honor IAAD. �



Dr. Sarah Ying and the Ataxia Student Ambas-sadors at Johns Hopkins University

Members of the Greater Atlanta Support Groupreceive a proclamation from Georgia GovernorSonny Perdue

E-mail AddressesWanted!

E-mail blasts from the National AtaxiaFoundation are sent out periodically onataxia research, events, and other timelyissues of interest regarding ataxia.Please send your e-mail address to

[email protected] so you don’t miss out!


Village of North Syracuse, NY

By Mary Jane Damiano

I held the IAAD ceremony on September 27at theNorth Syracuse Community Center. Thiswas my ninthyear of serving asan IAAD Coor-dinator. WSYRRadio NewsReporter JeffPaston served asMaster of Cere-monies. TheCentral NewYork Ataxia Sup-port Group wasin attendance. Ireceived procla-mations from theVillage of NorthSyracuse, City ofS y r a c u s e ,County of Onondaga, and State of New York.Assemblyman Al Stirpe presented me with theGovernor’s Proclamation. Refreshments wereserved.

My Service Dog CWC Emma and I appearedon theMDALabor Day Telethon. I spoke aboutliving with Friedreich’s ataxia.

British Columbia IAAD

By Sharon Keys

Generous donations from the people ofSummerland, British Columbia were collectedon International Ataxia Awareness Day.I had a table set up on Main Street and talked

about the disease to anyone who passed by, andhanded out the NAF buttons and bookmarks.I even got my picture on the local newspaper!In general, IAAD, here in Summerland, was a

success! We’re looking forward to next year,when we will hopefully a be able to do a Walk’n’ Roll event!

Seek AMiracle Ataxia Group (SAMAG)

By Chandu George

Our IAAD meeting started with the Indiantraditional lamp lighting by the eminent honor-able chief guests, Mr. Mankena Srinivas Reddy(Chairman, MIRD), Mr. Raja Reddy (Educa-tionalist), Mr. Suresh (Nobel NGO), and Mr.Dr. John Thomas (Medical Advisor, SAMAG).The welcome note was given by Mr. Balakr-

ishnan (SAMAG volunteer), inviting honorablechief guest Mr. Mankena Srinivas Reddy tospeak about the initiative.Mr. Mankena Srinivas Reddy said SAMAG is

one the best forums for spreading awareness andworking towards welfare of ataxians in India. Helater signed a proclamation recognizing Interna-tional Ataxia Awareness Day on September 25.Following his speech, he proclaimed Mr.

Chandu George (President of SAMAG) as theAndhra Pradesh (Indian State) Convener forAtaxia Group, as one of the wings under hisOrganization. He promised to take this initiativeto an all-India level and bring the ideas ofproviding resources to the notice of higherdignitaries.Dr. John Thomas shared information on what

ataxia is and how it can be identified, and other


Al Stirpe (left) presentsan IAAD proclamationto Mary Jane Damianowhile Emma looks on

Members of the Greater Atlanta Support Groupat their IAAD Picnic




advice on managing life with ataxia. He evenstressed the importance of setting up a SAMAGResearch Center and Rehabilitation Center tocarry out research activities and come up with acure, as well as to rehabilitate affected persons tolead a better, more independent life.Out of their experiences, Mr. Chandu George

and Ms. Nirmala shared their day-to-day activi-ties and suggested a few simple exercises for theataxians to make life better. The latest researchactivities, information, and programs beingcarried out by the National Ataxia Foundationand other worldwide ataxia organizations werediscussed and shared with guests. It was a goodnote for the IAAD meeting and an inspiringaspect for SAMAG that motivates us to dissemi-nate a message on ataxia awareness.The concluding note was given by Mr. Satish

(SAMAG volunteer). He briefed those in atten-dance about all the SAMAG activities that arecarried out to promote awareness on ataxia andexplained the need to achieve the objectives ofSAMAG.

Finally, the vote of thanks was given byMr. George (Senior) to the chief guests and otherassociates for the opportunity to conduct thisIAADmeeting and for giving their valuable timeto share their views. He also thanked ourSAMAG team for their collective efforts inmaking this event a grand success.


The Seek AMiracle Ataxia Group (SAMAG) celebrating International Ataxia Awareness Day in India

Srinivas Reddy (left) signs an IAAD proclama-tion while Chandu George (right) and GeorgeSr. look on

�



NAFExhibits at Abilities ExposBy Earl McLaughlin

The NAF exhibited at the Southern Califor-nia (Anaheim) and Minnesota (Minneapolis)Abilities Expos this year. The NAF is an officialsponsor of the Abilities Expo.The Southern California Abilities Expo was

held May 30- June 1, and was staffed by mem-bers of the Los Angeles and Orange CountyAtaxia Support Groups under the direction ofSid Luther, leader of the Los Angeles AtaxiaSupport Group.The Minnesota Abilities Expo was held

September 12-14 and was staffed by members ofthe Twin Cities Ataxia Support Group, underthe direction of its leader, LenoreHealey Schultz.The Abilities Expo is the largest show in the

nation devoted exclusively to products andservices for people with disabilities and otherswho need assistance, as well as family members,and health care and rehabilitation professionals.It offers an opportunity to see, try, compare, andbuy products and services that can enhance peo-ple’s lives to make life easier, more productive,more independent, and more enjoyable.A show like the Abilities Expo gives NAF an

opportunity to spread the word of ataxia. It’s a

great way to increase public awareness.NAF usually exhibits at two or three Abilities

Expos each year. For 2009, plans are being madeto exhibit at theNewYorkMetro Show onApril17-19, and the Southern California show (for the23rd time) on May 29-31. The Abilities Expo isalso planning to be in Chicago and Atlanta, ondates to be determined.For more information about the Abilities

Expo, go to www.abilitiesexpo.com. To find outmore about NAF’s exhibits, please contact EarlMcLaughlin at [email protected].

Twin Cities Ataxia Support Group membersJill Bigelow (left), Lenore Healey Schultz,Bob Strudavnt, and Karen Pirkl staff the NAFbooth at the Abilities Expo in Minneapolis

Use iSearchiGiveand NAF BenefitsiSearchiGive.com, a new search engine

powered by Yahoo! Search and iGive.com,is the internet’s first online shopping mallwhere a portion of each purchase is do-nated to a charity of your choice.Sign up today and indicate that the

National Ataxia Foundation is your favoritecause. It is totally free with no hidden feesand provides support for the important workof the National Ataxia Foundation.Thank you for searching and shopping!

MysteryDiagnosis

The Discovery Health Channel TV show“Mystery Diagnosis” is currently casting fortheir seventh season. They profile storiesof people dealing with rare diseases whohave struggled to find a diagnosis or havebeen misdiagnosed in some way.The producers are interested in doing a

story on someone with ataxia. If you meetthe description above and would like totell your story, please send an e-mail [email protected].

�



AJourneyof HopeBy Crystal Frohna

My story begins rather late in life. Although Ihad been getting more fatigued over the past fewyears, I turned 40 with a positive attitude. I hada good job, a wonderful husband and a beautiful18-year-old daughter who was going off tocollege.Things changed one day when my right hand

went numb. My doctor assured me over thephone it was probably carpal tunnel syndrome.Upon examining me, however, he referred meto a neurologist, the first of many. After lengthytesting, the neurologist handedme a slip of paperthat said “Charcot Marie Tooth disease (CMT),peripheral neuropathy” and assured me I wouldbe healthy into my 70s. I had never heard ofCMT. This was in 1987, and there was no infor-mation available. I was able to find out whatperipheral neuropathy was, and carried on withmy life.Next I began to bump into walls at work,

which people commented on and I joked about,but it concerned me. After that my left handwent numb, then my right foot, and finally myleft foot. My walking started to deteriorate. Asfar as I could tell, this was more than peripheralneuropathy.Two years later we were on a trip and I got up

in the middle of the night to use the restroomand was completely distressed when I fell back inbed. It felt like someone pushedme down! Fromthat day on, it was as though my body had had a40-year warranty and I was two years beyond itsexpiration date!I underwent more testing and the results were

so unusual it was enough to get me on SocialSecurity Disability Insurance. I mournedmy oldlife. People didn’t understand how I could bedisabled because I “looked good,” but I had newsymptoms that kept cropping up. I developednystagmus. Suddenly my face went numb �

NAF Earns 4-Star Rating fromCharity Navigator for Fifth Straight YearThe National Ataxia Foundation (NAF) is

pleased to announce that Charity Navigator,America’s largest and leading charity evaluator,has awarded the Foundation its fifth consecu-tive 4-star rating out of a possible four stars.This coveted 4-star rating is awarded to non-profit organizations that have shown soundfiscal management.Charity Navigator in a recent letter to the Na-

tional Ataxia Foundation stated, “We are proudto announce National Ataxia Foundation hasearned our fifth consecutive 4-star rating forits ability to efficiently manage and grow itsfinances. Only 3% of the charities we’ve rated

have received at least 5 consecutive 4-star eval-uations, indicating that National Ataxia Founda-tion consistently executes its mission in afiscally responsible way, and outperforms mostcharities in America.”The National Ataxia Foundation is honored to

receive this coveted 4-star rating, now five yearsin a row, and will continue to work hard in itsefforts of managing its programs and servicesin an effective and efficient manner.The Foundation would like to thank you for

your support and will continue its dedication toimprove the lives of persons affected by ataxiathrough support, education, and research.



and stayed that way. My walking deteriorated tothe point that I needed to use a wheelchair.At this point I had to try not to fall into what I

call the “poor me” syndrome. The frustration ofsearching for a correct diagnosis combined withsymptoms that are changing almost daily canbring you down into a quagmire ofdepression and hopelessness.My husband and I learned to take

things one day at a time. He hadbecome my caretaker, cooked allthe meals, did all the grocery shop-ping and ran his own business. Ihelped out where I could withlaundry and driving myself todoctor’s appointments. I couldmake short runs to a store for a fewthings, so I still felt useful. As theyears wore on and new symptomspopped up we started joking thatwe were married “for worse or worse.” It’s soimportant to keep a good sense of humor whengoing through a lengthy debilitating illness,especially when the prognosis is unknown.I didn’t get a definitive diagnosis until

October of 2006, 19 years after my first symp-toms showed up. For 10 years all the neurologistshad agreed I had Friedreich’s ataxia. My currentneurologist suggested I have genetic testingperformed.We were both f labbergasted when itcame back negative. So he tested me for all the

SCA’s and they all came backnegative. He decided to run a testfor CMT. It came back positive:CMT2A unknown variant withataxia. I finally had a diagnosis thatmade sense! I had a rare, unknownvariant of CMT with ataxia,probably specific to my family andunknown back in 1987.I didn’t know about the Tampa

Bay Ataxia Support Group orNAFuntil 2004. I learned somuch at myfirst meeting! It was wonderful tomeet people with problems like

mine and to know I was not alone in this.I found my hope by finding others like me

and getting information through NAF. It is mymission to help other ataxians find their way tohope as well.

Crystal Frohna

�

Making MusicLike many people, Brandon Campbell finds in-

spiration and comfort from music. He developedan appreciation and knack for musical instru-ments after taking piano lessons asa young child, and playing the celloin middle school. At 18, Campbellpicked up the guitar and found hisinstrument of choice. Ten yearslater he was diagnosed with spo-radic cerebellar ataxia, but music re-mained a constant in his life.Campbell recently released an

album entitled “Trilogies,” which isa collection of instrumental rock guitar originalsthat he wrote, performed, and recorded.Campbell says that the music he plays has

been greatly influenced by his ataxia. “In theyears since the diagnosis it has become some-what melancholic, but at the same time it is

beautiful to me and makes mehappy,” he said.He notes that although his ataxia

makes some things in life difficult, ithas not affected his guitar playing.“Playing the guitar lets me connectwith something special. It’s some-thing ataxia can never affect,” headded.Campbell plans to donate 15% of

proceeds from his CD sales to the NationalAtaxia Foundation. “Trilogies” is available atwww.cdbaby.com and www.amazon.com.



Dates: March 20-22, 2009 Location: Doubletree Hotel Seattle Airport18740 International BoulevardSeattle, WA 98188(206) 246-8600 Fax: (206) 901-5923

Advance Registration Fee for NAF members or Spouse/Caregiver:A low registration fee of $55 per person gains you complete access to all Break Out andGeneral Sessions, as well as participation in exhibits, breaks, the Friday Night Reception, andthe Saturday Evening Banquet. Sign up early to get this low advance rate!Advance Registration Family Rate:(This rate is applied to NAF members, their spouse/caregiver and children under 18 only!)$55 per person with a maximum fee of $220.Non-Member Advance Rates:If you are not a current paid member of NAF, the advance registration rate is $110 per personwith a $440 maximum for families.

Late Registration or Registration at the Door (NOT RECOMMENDED):The fee for registrations postmarked after February15, 2009 is $80 per person for NAFMembers($320 maximum for families) and $135 for non-members ($540 maximum for families).

PLEASE NOTE: The Registration FeesDO NOT include hotel or transportation fees!

Instructions for Registration:1. Complete the enclosed registration form and mail, with your payment, to NAF office. Please

fill out the form completely. The requested information is necessary to complete prepara-tions for the meeting.

2. Registration Fees. If you plan to attend either just the conference or just the banquet, the fullper person fee will still be charged. If you are bringing your children to the meeting, thefollowing fees will be charged: children two years and under are free; children three years andover will be charged the full meeting fee.

3. Childcare services will not be provided by NAF or its local volunteers.4. Complete and return both pages of the Registration form by February15, 2009. Please fill out

the name portion of the registration exactly as you would like it to appear on your name badge.

The Board of Directors of the National Ataxia FoundationCordially Invites You to the 2009Annual MembershipMeeting

“ClimbEveryMountain”

Registration Deadline is February 15, 2009Please complete both pages of the registration form and return to the following address:National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752

(763) 553-0020 Fax: (763) 553-0167 E-mail: [email protected] your convenience, a return envelope has been provided in this issue



Birds of a FeatherBirds of a Feather Informal Groups will meet from 2:00 - 5:00 p.m. in various meeting rooms. Please check the hall signsfor your specific group’s location. Tentative room assignments are as follows:

Session Location NotesAtaxiansSCA1 .................................................... Evergreen 3SCA2 .................................................... Cascade 13SCA3 .................................................... Cascade 9 & 10SCA6 .................................................... Cascade 12All other SCAs ...................................... Evergreen 4 ........................... Any SCA other than 1, 2, 3, or 6Sporadic/MSA ...................................... Northwest 3FAAdults ............................................... Grand BallroomUnknown/Episodic/AOA 1 & 2 .............. Northwest 2 ........................... Attend if you do not know your type of ataxia

Parents ..................................................... Evergreen 1 & 2 .................... Physicians will join the group for the final hourCaregivers ............................................... Cascade 3 & 4 ....................... See below*Spouses ................................................... Cascade 1 & 2 ....................... See below**Due to the privacy of the issues talked about in these sessions, we encourage those with ataxia to attend the BOF sessions for ataxians.

2009NAFAnnualMembershipMeetingAgendaPlease Note: Due to circumstances beyond our control, this meeting agenda is subject to change.

WEDNESDAY, March 18Event Location TimeNAF Registration ...................................... Northwest 1 ................................................................. 6:00 - 9:00 p.m.

THURSDAY, March 19Event Location TimeNAF Registration ...................................... Northwest 1 ................................................................. 8:00 a.m. - 9:00 p.m.Ride Ataxia III Arrival ................................ Tower Entrance/Ballroom Foyer ................................ 2:00 p.m.Leadership Meeting .................................. Northwest 2 ................................................................. 3:30 - 6:00 p.m.Internet Group .......................................... Northwest 2 ................................................................. 7:00 - 9:00 p.m.

FRIDAY, March 20Event Location TimeNAF Registration ...................................... Northwest 1 ................................................................. 7:30 a.m. - 5:30 p.m.Exhibitors .................................................. Ballroom Foyer ........................................................... 8:00 a.m. - 5:30 p.m.General Sessions ..................................... Grand Ballroom .......................................................... 9:00 a.m. - 1:00 p.m.Nintendo Wii Demonstration .................... Olympic 1 .................................................................... 10:00 a.m. - 2:00 p.m.Lunch ........................................................ On Your Own .............................................................. 1:00 p.m.Birds of a Feather (see below) ................. Various Meeting Rooms ............................................. 2:00 - 5:00 p.m.Reception ................................................. Grand Ballroom .......................................................... 7:00 p.m.

Time Speaker Topic9:00 a.m. ............ Arnie Gruetzmacher ................................ Welcome & Opening Remarks9:20 a.m. ............ Meilee Anderson ...................................... Welcome from the Seattle South Side Office of Tourism9:30 a.m. ............ Laura Ranum, PhD ................................. Ataxia 10110:00 a.m. .......... Corrie Smith, MS, CGC ........................... Genetics 101/Gene Testing11:00 a.m. .............................................................................. BREAK11:30 a.m. ........... Harry Orr, PhD ......................................... Ataxia Research ReviewNoon ................... S.H. Subramony, MD .............................. Ataxia Patient Registries12:30 p.m. .......... Q&A Panel1:00 p.m. ................................................................................ LUNCH

Friday General Sessions


Event Location TimeNAF Registration ...................................... Northwest 1 ................................................................. 7:30 a.m. - 5:30 p.m.Exhibitors .................................................. Ballroom Foyer ........................................................... 8:00 a.m. - 6:00 p.m.General Sessions ..................................... Grand Ballroom .......................................................... 8:30 a.m. - noonNintendo Wii Demonstration .................... Olympic 1 .................................................................... 10:00 a.m. - 2:00 p.m.Lunch ........................................................ On Your Own .............................................................. NoonGeneral Sessions ..................................... Grand Ballroom .......................................................... 1:00 - 5:00 p.m.Silent Auction ............................................ Northwest 2 & 3 .......................................................... 3:30 - 7:30 p.m.Catholic Service ........................................ Cascade 9 & 10 .......................................................... 6:00 - 6:45 p.m.Non-denominational Service .................... Cascade 13 ................................................................. 6:00 - 6:45 p.m.NAF Banquet ............................................ Grand Ballroom .......................................................... 7:00 p.m.


2009NAFAnnualMembershipMeetingAgendaPlease Note: Due to circumstances beyond our control, this meeting agenda is subject to change.

SATURDAY, March 21

Time Speaker Topic8:30 a.m. ............ Thomas Bird, MD .................................... Ataxia: The Seattle Experience9:00 a.m. ............ Gregory Carter, MD, MS ......................... Rehabilitation Aspects of Ataxia10:00 a.m. .......... Kristie Spencer, PhD, CCC-SLP ............. Speech & Swallowing11:00 a.m. ........... Michael Wilensky, MD ............................. Medication Considerations in Ataxia11:30 a.m. ........... Q&A PanelNoon ...................................................................................... LUNCH1:00 p.m. ............ Mark Napierala, PhD ............................... Targeting DNA Structure for Friedreich’s Ataxia Therapy1:30 p.m. ............ Henry Paulson, MD, PhD ........................ Polyglutamine Ataxias2:00 p.m. ............ Ralph Miller .............................................. Wheelchair Yoga3:00 p.m. ............ Arnie Gruetzmacher ................................ Financial Planning4:00 p.m. ............ Sid Gilman, MD ....................................... Sporadic Ataxia4:30 p.m. ............ Q&A Panel

Saturday General Sessions

SUNDAY, March 22Event Location TimeNAF Registration ...................................... Northwest 1 ................................................................. 7:30 - 11:00 a.m.Exhibitors .................................................. Ballroom Foyer ........................................................... 8:00 a.m. - noonBusiness Meeting ..................................... Grand Ballroom .......................................................... 8:00 - 8:30 a.m.General Sessions ..................................... Grand Ballroom .......................................................... 8:30 a.m. - 1:00 p.m.

Time Speaker Topic8:30 a.m. ............ Susan Perlman, MD ................................ Managing Ataxia and Managing your Neurologist9:00 a.m. ............ David Lynch, MD ..................................... FRDAClinical Trials9:30 a.m. ............ Timothy Maher, PhD ................................ Nutrition and Ataxia10:00 a.m. .......... Arnulf Koeppen, MD ................................ Tissue Donation10:30 a.m. .......... Ryan Boudreau, PhD .............................. RNAi Research11:00 a.m. .......... Grisel Lopez, MD ..................................... Lithium Treatment for Patients with SCA1 – Clinical Trial11:30 a.m. .......... George Wilmot, MD, PhD ....................... What We Have LearnedNoon .................. Q&A Panel................................................12:30 p.m. .......... Arnie Gruetzmacher ................................ Closing Remarks

Sunday General Sessions

View the latest information available about the Annual Membership Meeting on our Web site, www.ataxia.org.



Please complete the following table for each person: #1 #2 #3 #4 #51. Is this your first NAF Annual Meeting? Y or N2. Are you attending the Saturday evening banquet?

(included with your registration fee) Y or N3. If you are attending the Banquet, would you like theVegetarian (V) or Gluten-Free (G) option? Blank, V or G

4. Will you be using a Scooter (S), Manual Wheelchair (M),Electric Wheelchair (E), or a Walker (W)? Blank, S, M, E or W

5. Please indicate if you are the Personal Care Attendant Y or N6. Are you a paid member of NAF? (Contact us if unsure) Y or N

2009 NAFAnnual MembershipMeeting Registration1. Name: _______________________________Name on Badge: _______________________Address: ______________________________City/State/Zip: _________________________Country: ________ Phone: _______________E-mail: _______________________________InterNAF/Chat Name:____________________� Adult (18+) � Teen (13-17) � Child (0-12)

3. Name: _______________________________Name on Badge: _______________________Address: ______________________________City/State/Zip: _________________________Country: ________ Phone: _______________E-mail: _______________________________InterNAF/Chat Name:____________________� Adult (18+) � Teen (13-17) � Child (0-12)




TRAVEL INFORMATIONFlying? � Yes � No If no, how will you be traveling (i.e., driving, bus)? __________________________For parking arrangements at the hotel we need to know if you will be driving a van with a lift: � Yes � NoAir Carrier: _______________________________ Flight Number: _____________________________Arrival Date/Time:__________________________ Hotel Check-in Date:_________________________Departure Date/Time:_______________________ Hotel Check-out Date:________________________

Assist Dog Name: ________________________

Assist Dog Name: ________________________

By attending the 2009 NAF Annual Membership Meeting you give your consent, unless you notify us otherwise, to use yourimage captured during the conference through video, photographs, or digital imagery, to be used by the National Ataxia

Foundation in promotional materials, publications, and web site and waive any and all rights to these images.



PAYMENT INFORMATION: � Visa � MasterCard � Check enclosed

Name of Card Holder: ___________________________________________________________________________

Address: _____________________________________________________________________________________

City:__________________________________ State: __________ Zip: ____________ Country: _______________

Phone Number: _____________________________ E-mail: ___________________________________________

Credit Card Number:________________________________________ Expiration Date: ______________________

Signature of Card Holder: ____________________________________

2009NAFAnnualMembershipMeetingRegistrationPayment Information for NAF MEMBERS Amount Quantity Total

Registration Fee for INDIVIDUAL Members and Spouse/Caregiver $55 ea.

FAMILY RATE (Applies to NAF members who have a $55 ea.Household, Patron, or Lifetime Membership. This or maximumincludes members, their spouses and children under $22018 only!) Maximum: $220

Late Registration for NAF Members (Includes all registrations $80 ea.postmarked after Feb. 15 and all registrations at the door )

Payment Information for NON-NAF MEMBERS Amount Quantity Total

Registration Fee for Non-NAF Members $110 ea.

FAMILY RATE for Non-NAF Members (Maximum family $110 ea.rate for individuals, their spouses and children under or max. $44018 who are not members of NAF) Maximum: $440

Late Registration for Non-NAF Members (Includes all regis- $135 ea.trations postmarked after Feb. 15 and all registrations at the door ) or max. $540

TOTAL CHARGES:

Take advantage of the MEMBER RATE and JOIN TODAY! Quantity Total

Yes, I would like to be a member of NAF! Please add an ADDITIONAL� $25+ (Annual Individual) � $45+ (Annual Household)� $100+ (Annual Patron) � $500 (Lifetime)____ $15 for Addresses outside the United States

You may register for the meeting as a member if you sign up today!

Yes, I’d like to help others attend an annual meeting in the future!Here is my sponsorship contribution!� $55 (Offset of Registration) � $250 (Travel Grant)� Other: _____________ (Any amount is helpful!)

Registration Deadline is February 15, 2009Please complete both pages of the registration form and return to the following address:National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447-4752

(763) 553-0020 Fax: (763) 553-0167 E-mail: [email protected] your convenience, a return envelope has been provided in this issue



In previous issues, we discussed the firstcomponents of the Comprehensive Life Plan: theLife Plan component, the Financial component,and the Legal component. In this issue we willmove on to the last component,Plan Management. This step isas important to a ComprehensiveLife Plan as regular maintenance isto a new house. Both will deterio-rate without attention.

Plan Management involves threeparts: 1) preparing a Life PlanningPortfolio, 2) meeting with yoursuccessors, and 3) participating inannual reviews.

The objective of the Life Plan-ning Portfolio is to put all-impor-tant information and documentsregarding your family member with a disabilityand you in one easy-to-find location. This willsave a lot of time and frustration for your succes-sors. I have found that a three-ring binder withplastic page protectors is excellent for a LifePlanning Portfolio. Items to include are: thecompleted Letter of Intent, copies of the familymember’s birth certificate, Social Security cardand health card; guardianship or conservatorshipdocuments; a copy of his or her most recentMedicaid application; information on thegovernment agency you may have worked withand a copy of the case worker’s card; names andphone number of contact persons at the various

agencies you work with; a picture of the familymember with a disability, copies of admissionpapers for schools, camps, etc; IEP (IndividualEducation Plan) or other evaluations and

plans; and any other valuableinformation.

The caregiver’s items shouldinclude: copies of your willsand Supplemental Needs Trust;a record of all assets in the trust;copies of your recent tax return;your Social Security card(s); birth,marriage, and divorce records;a family portrait and any otherdocuments that will assist thetransition from the caregiver tothe successor. Finally, place thePlanning Portfolio in a location

where your successors know it is and where it isreadily available to them.

It is important to meet with your successors assoon as possible after you have completed yourplanning. You may want to have them over forSunday dinner. You will want to explain to themyour Comprehensive Life Plan and detail theirduties and your expectations. Show them whereyou will be keeping your Life Planning Portfolioand other pertinent information. Also, notifyfriends and relatives of your Supplemental NeedsTrust, so that if they want to leave a gift or

Life Planning –TheFinal Componentin the Estate PlanningProcessPlanning For the Financial Future of A PersonWith ADisability

By Arnie Gruetzmacher

This is the final part of a five-part series of articles regarding the Life Plan. Arnie has spent the last 27 yearsworking with families of persons with a disability assisting them in preparing a Comprehensive Life Plan. Ifyou have any questions regarding financial/estate planning, please e-mail or address the Editor and Arnie willreply in our next issue or contact you directly.


Arnie Gruetzmacher



inheritance to your family member with adisability, they can leave it in the trust.

On an annual basis, review your plan to assurethat all of your objectives are being met. Updatethe Letter of Intent and reevaluate your succes-sors. Have some of them died, moved away or

indicated a lack of interest? Review your fund-ing goals to assure that they are still realistic andchange any legal documents as needed.

Finally, RELAX. You can now be assuredthat you have done as much as is possible toassure that your family member with a disabilitywill have an excellent quality of life even whenyou are no longer here to help provide it forthem.

Life PlanningContinued from page 27

�

By Tracey Gallant BalisDon’t we all remember eating those caramel apples,Feeling them drip all over our fingers, boy those were good,Raking up the Fall colored leaves, only to jump in them,We were carefree, we still can be,The fun it was stuffing Dad’s old flannel shirt and jeans,Making that scarecrowwe were so proud of,Feeling the crisp dry air on our face,I always remember howwonderful reminiscing is,We can all go to those places from the past,For me, I do this and it takes me away frommy painand struggles that afflict me daily, having SCA2.Reminiscing for a short while is a breath of fresh air,Some days it is hard for me to smile, I go to those places,to those places from the past, and the smile starts flowing,So next time when you just can’t make that smile,Let’s Reminisce

Tracey Gallant Balis continued a written tradition startedin the 1980’s by her father John B. Gallant Jr. before hispassing in 1988. The two regularly contributed originalpoems and personal stories related to their hereditaryataxia for publication in Generations.Tracey Gallant Balis passed away in October 2008, yetshe and her father’s writings will live on. Below is a poemTracey wrote to share with the readers of Generations.

Let’s Reminisce



NAF Young InvestigatorReceives Funding from theNational Institutes of HealthIn December 2006, the National Ataxia Foundation awarded a Young Investigator Research Award to MarekNapierala, PhD, for his research application entitled, “DNA Structure of GAA*TTC Repeats as a Targetfor Friedreich’s Ataxia Therapy.” In addition to advancing research to find treatments and cures for ataxia,another purpose of NAF’s Young Investigator Research Award is to encourage young clinical and scientificinvestigators to pursue a career in the field of ataxia. It is exciting to report that Dr. Napierala’s R21 grantapplication to the National Institutes of Health entitled: “Targeting Trinucleotide Repeats-induced Tran-scriptional Silencing in Friedreich’s Ataxia” has been funded by National Institute of Neurological Diseasesand Stroke. These research efforts will be a direct continuation of his Young Investigator Award.

The National Ataxia Foundation is very pleased that Dr. Napierala received additional funding to continuehis important work. NAF funded researchers are often able to leverage additional support from other sources oncethey receive an NAF research grant. In fact, many times researchers who are awarded an NAF research grantare able to leverage an additional 5- to 10-fold increase in funding from their initial NAF grant. Some NAFsponsored researchers have seen a 100-fold increase in funding levels. What that means is that each NAFdollar spent on research could equate to an additional 5- to 100-fold increase in additional funding for ataxiaresearch from other sources.

Below you will find Dr. Napierala’s summary of the research that he has been conducting.

Friedreich’s ataxia (FRDA) is a genetic disorderaffecting approximately 1 in 50,000 people. TheFRDA symptoms include progressive muscleweakness and loss of coordination, visionimpairment and hearing loss, heart muscle ab-normalities, scoliosis, and diabetes. Friedreich’sataxia is caused by mutation in the FXN gene.The most frequent genetic defect in FRDApatients is an elongation of certain type ofDNA sequence called GAA repeats. In healthypeople there are a few copies of GAA repeats inthe FXN gene, while in FRDA patients thissequence is expanded up to hundreds or eventhousands of copies. This mutation in the generesponsible for Friedreich’s ataxia leads to a blockin the information f low from DNA and conse-quently to the deficiency in the production ofthe protein called frataxin.

The goal of our research is to find potential

therapeutic drugs capable of releasing the blockimposed by long GAA repeats and increase theproduction of the frataxin. Our strategy is toanalyze hundreds of thousands of chemicalcompounds of potential therapeutic activities andselect those which will increase the productionof frataxin in FRDA patients. To analyze suchlarge numbers of potential drugs, we developeda model gene, harboring genetic defect identicalto the FRDA mutation. The activity of thismodel gene, unlike the activity of the FRDAgene, can be analyzed using automatic, highlyefficient robotic systems. This high-throughputapproach will allow us to screen collections ofthousands of chemicals in the search for stimula-tors of frataxin production. Selected compoundswill be tested in human cell lines and Friedreich’s




ataxia animal models.This research was initiated by a grant awarded

to us by the National Ataxia Foundation. In theend of September of 2008 the National Instituteof Neurological Diseases and Stroke, a compo-nent of the National Institutes of Health,awarded our grant application for continuationand expansion of these studies. This support will

allow us to move from the construction andvalidation stage of our model system towardsscreening of large libraries of potential drugs.The high-throughput analyses will be conductedat one of the Molecular Library Probe Produc-tion Center designated by National Institutes ofHealth.

We expect that this research will reveal newclasses of potential therapeutic compounds andlead to the development of treatment for Fried-reich’s ataxia.

NAF Young Investigator...Continued from page 29

�

David’s StoryBy Linda Worsham

My husband David received MRI resultsshowing degeneration of his cerebellum onNovember 16, 2001, just 10 days short of his54th birthday. He died September 25, 2008.

I spent the ninth annual International AtaxiaAwareness Day celebrating the life of a man wholived, and died, with ataxia yet never lost hope –and never lost his ability to make a joke and laughwith a visitor. I celebrate ongoing efforts towardincreased awareness and research related to alldisorders resulting in ataxia; and I sincerely hopewe will eventually have more answers than ques-tions.

From the moment we received the diagnosis,David and I read everything we could find oncerebellum degeneration and ataxia. When ourdaughter introduced us to a beautiful middle-aged woman diagnosed with Friedreich’s ataxia,we began attending ataxia support group meet-ings and readingGenerations.

During the year following David’s diagnosis,we lived on hope (and denial). David was ableto walk using a cane, so we began collectinginteresting-looking canes for every occasion.His speech had become a little slurred, but wejoked about his southern drawl and tendency to

mumble – and we laughed about how I didenough talking for both of us. Later, when Davidneeded a walker instead of a cane, we decoratedhis first little three-wheeled model with HarleyDavidson emblems.

David and I shared mixed feelings about theataxia support group meetings. We enjoyedgroup members’ stories about working aroundphysical limitations. We identified strongly withmembers who used humor as a coping skill, andthose who resolved to live in the present andmake the most of each day. We did not relate togroup members looking for a pity party. Davidand I searched the Internet and read everythingwe could find about ataxia, but we were left withmore questions than answers.

At six-feet-two inches tall and 195 pounds,David was an energetic picture of health. Myhusband was truly in his prime, enjoying thesuccess of his small business, our log vacationhome in the Tennessee hills, and the fun we werehaving learning to live again as just a couple inour newly empty nest.

David participated in physical therapy sessionsand enthusiastically practiced every prescribedroutine. He also practiced speech therapy �



exercises and never doubted he would prevailover his shrunken cerebellum. David and Ialways tackled problems with optimism, creativ-ity, and determination. Cerebellar ataxia wouldbe no different, but we discovered the battlewould take place on an up-hill grade.

During the second year after his diagnosis,David had to faced the harsh reality that he couldno longer effectively run his business. Customerconfidence in the stability of the companybecame shaky when the owner’s speech andmobility impairment became known, and ordersdeclined. The company was dissolved and wesold the 25,000 square foot build-ing housing one of David’s proud-est achievements.

We soon began feeling likethe proverbial ‘hot potato’ beingbounced around among medicalspecialists. The neurologist told usa bladder problem was urological,and the urologist told us the prob-lem was neurological. Althougheach of David’s doctors was highlycompetent and empathetic, wequickly came to understand howvery little the medical communityunderstands about cerebellum degeneration –and how severely limited treatment options are.

After weighing alternatives and assessing prior-ities, David and I decided to sell our home inFlorida and relocate to our Tennessee “cabin inthe woods.” David and I had self-contractedbuilding our vacation home, and we had donemuch of the interior finishing. While moving toour home in Tennessee would necessitate myleaving a 24-year career with a social servicesorganization in Florida (and a comfortable in-come), we knew the decision was right for us.Our new adventure began in November 2005.

David was able to ambulate slowly with the useof a walker, and he struggled to make his speechunderstood, but his spirits were great. Weenjoyed looking out the windows and seeingcows instead of neighbors; and we installed a

stair-lift chair so he could access his home officeon the basement level of the house. David’s dayswere spent at his computer e-mailing friends orPhotoshopping old family pictures. With theright accommodations, David was able to be self-sufficient enough during the day for me to takea reporter job with the local newspaper. Life wasgood – different, but good.

David spent most of his time at home in ahospital bed during 2007, because of fatigue anddiminished stamina. I moved his computer to thebedroom and he continued e-mailing. Onceagain, David made the best of an undesirable cir-

cumstance. He survived a massivepulmonary embolism, presumablyattributed to throwing a clot as aresult of immobility, on December30, 2007. His heart and lungs werestrong and healthy enough to allowhim to survive, against the odds,according to the pulmonary spe-cialist. He joked with doctors andnurses and kept visitors laughingduring the 12-day hospital stay.

David never regained the limitedstrength he had prior to the em-bolism and was bedridden most

of the time until his death on September 25.Although he needed total physical care duringhis final months, David never lost his abilityto find humor in everything. On Saturday,September 20, after having one of his favoritebreakfasts and bantering about life in general, myhusband fell asleep for a nap and never awoke.David’s final MRI showed multiple brain infarc-tions and no cognitive function. We authorizedremoval of life support on September 25, andDavid was free of the body that had failed him.

While ataxia research news is encouraging, Iwant to share David’s story with people and theirloved ones who live with the realities of ataxiatoday. We have to play the life cards we are dealt;but if we decide not to be defined by disability,life quality can be found and appreciated everyday, at every stage.

David Worsham

�


When Marcia Kohl of Brainerd, MN put on afundraiser for the National Ataxia Foundationshe found a helping hand from her family. Kohlenlisted the time and talents of her 11 siblingsand subsequent band of nieces, nephews, andextended family members to help plan andcoordinate her event.

The fundraiser was inspired by Marcia’shusband Brian and son Jordan, who both haveSCA 2.

Their fundraising activities included the sale oft-shirts specifically made for the event and cook-books filled with family recipes. Both items weregiven an artistic f lair and designed by members ofKohl’s family.

The event also included a silent auction,temporary tattoo and face-painting station, aswell as live entertainment by the Wayne RennBand. Kohl notes that the efforts of her nieceMegan Cummings and Extreme Cage Fighter,Brock Larson helped make the event a success.

The local newspaper helped publicize theevent, and local businesses made donations,including goods and services.

For their efforts Kohl and her family raisedalmost $13,000, which they donated to NAF tosupport promising ataxia research.

The Foundation would like to thank MarciaKohl and her family for their fundraising effortsand generous donation!


TISSUE DONATIONIf you are interested

in helping ataxia researchby donation of tissue

after death, please contactDr. Arnulf Koeppen forinformation and details.

Arnulf Koeppen, MDProfessor of NeurologyVA Medical Center113 Holland Ave.Albany, NY 12208

Phone: 518.626.6377Fax: 518.626.6369

E-mail: [email protected]

Fundraising with the Family

Kohl family members Brian (left), Jordan, andMarcia pose for a photo during their fundraiser

Matching GiftsMany employers will match your gift to

NAF. Please ask your employer if they havea Matching Gifts Program. If they do, yourgift will double in value.Each dollar contributed brings help and

hope to ataxia families across the country.

GoodSearchDid you know that using GoodSearch for

Internet searches provides donations toNAF? GoodSearch recently added onlineshopping to their site, with a donation madeto the Foundation with every purchase.Visit www.goodsearch.com today!

�



She showed us slides and films of ataxia patientsbefore and after her studies with the drug. Mostmembers of WCFASG have seen this with theirown eyes because we have several membersparticipating in her studies. But it is amazing towatch the patients before and then after treat-ment on video. The improvement in symptomsis astounding in some patients!

Dr. Zesiewicz also told us that she and her col-laborators from UCLA, University of Chicago,Emory University, UTMB Galveston, Univer-sity of Pennsylvania, and University of Michi-

gan are in the very first stages of this research andthat NAF has funded her new clinical studybeginning in January. Thank you, NAF!

Dr. Thomas Clouse of “Walking WithAtaxia” fame was our second speaker and, asalways, was very motivational. He maintains thatwe still have all the “equipment” required to

Greater Chicago AreaAtaxia Support GroupBy Craig Lisack

Our recent meetings have featured a physicaltherapist from Good Samaritan Hospital pre-senting an exercise program for ataxians as wellas a mobility aid presentation by a representativefrom the Standing Chair Co. Both were metwith extreme interest by our members.

Many of us got together at Arabian KnightsFarm in August for an ataxia fundraiser. Thanksmuch to the Golminas and Cepkauskas familiesfor putting this together. Total attendance wasgreat and we raised a good amount of funds andawareness for the NAF and the University ofChicago’s Ataxia Center. To learn more aboutupcoming events, visit www.fightataxia.org.

West Central FloridaAtaxia Support GroupBy Crystal Frohna

We had our Annual Meeting and Thanks-giving Feast on November 8 at FeathersoundCommunity in Clearwater, FL. We had a goodattendance of about 40 people including newfriends from the Jacksonville and OrlandoGroups, as well as Bill Lee, who came all the wayfrom Pennsylvania. We all enjoyed a completeturkey dinner prepared and donated by groupmembers and our speakers!

Dr. Theresa Zesiewicz is a neurologist whodoes clinical research in ataxia at the Universityof South Florida with amazing results. We wereprivileged to have her as our first speaker. Sheexplained that it came to her attention that adrug currently on the market improved ataxia. Continued on page 34

Dr. Theresa Zesiewicz (right) and Dr. ThomasClouse watch a video during the November 8meeting of the West Central Florida SupportGroup



NAF. You can sign up online or on the backof a Generations newsletter. To subscribe toour on-line group, please send an e-mail [email protected]. To signup for the Cooperative Ataxia Group Registryonline, for ataxians interested in participating inataxia studies or clinical trials, please visitwww.cooperative-ataxia-group.org/participate.htm.

We decided to schedule only three meetingsnext year at the Church in Lafayette. The tenta-tive dates for 2009 are April 11, July 11, andOctober (date TBD). We welcome everyone toour meetings and if you can volunteer to helpwith lunch or a guest speaker for our meetings,please contact me. For further information onthe NCASG, please contact group leaderDeborah Omictin at (510) 783-3190 [email protected], or by visiting our website atwww.geocities.com/casupport.

Northeast Florida Ataxia Support GroupBy June McGrane

Our N.E. Florida Ataxia Support Group metat the Bridges Restaurant in Jacksonville tocelebrate International Ataxia Awareness Day.We enjoyed good weather and a wonderfulwater view.

On November 8, we changed plans andaccepted the invitation from the West CentralFlorida Support Group to join them for theirmeeting. Some of our members were able tojoin them for an early, delicious Thanksgivingdinner and presentations from two speakers.

Dr. Theresa Zesiewicz, of the University ofSouth Florida, and Dr. Tom Clouse were thespeakers. They were very informative andanswered many questions. Dr. Zesiewicz isdoing extensive research and trials on ataxia (sheworks on certain types of ataxia). Dr. Clousespoke on many topics regarding ataxia. It wasgreat to meet with Crystal Frohna, president ofthe West Central group, and many of her groupmembers.

Our next meeting will be held in a �

walk, but because of cerebellar/spinal dysfunc-tion we have acquired habits in our posture andmovement to compensate and thereby keep ourbalance, and that these bad habits prevent usfrom walking more normally. With properstrengthening of the body and correction ofthese bad habits, Dr. Clouse has shown that aperson with ataxia can improve their walkingability through confidence and hard work.

Dr. Clouse has SCA-14 and developed hismethods by strengthening his own body andretraining himself how to walk. His demonstra-tions with several “guinea pigs” amongst theattendees showed us his methods of getting onthe road to walking better. Not only did he getthe patients to walk better in just minutes, theparticipants gained more confidence as well!

This was our third visit from Dr. Clouse andwe welcome him back any time. If you get achance to see Dr. Clouse in action, I stronglyadvise you to attend!

Northern CaliforniaAtaxia Support Group (NCASG)By Deborah Taylor Omictin

The Northern California Ataxia SupportGroup (NCASG) held its last meeting of theyear on October 11 with several newcomers inattendance. We had no formal guest speaker butheard from several that attended the recentACARM7 and our first Walk ’n’ Roll events inSeptember. We enthusiastically thanked DawnPollak for organizing the Walk ’n’ Roll and hopeit will become an annual event for our group.After a delicious lunch we broke into two groupsfor discussion for the remainder of the meeting.We thanked Mike Fernandes for coordinatingthe ACARM7 event. The next ACARM willbe in two years.

To have our meeting f lyers mailed directly toyour home you must become a member of

Chapter and Support Group NewsContinued from page 33



meeting room at Baptist South Hospital in Feb-ruary, 2009. We look forward to getting togetherand welcome any newcomers and their care-givers.

Twin Cities Ataxia Support GroupBy Lenore Healey Schultz

The Twin Cities Support Group had theirNovember meeting on Tuesday, November 18.We had a great turnout. Dr. Larry Schut hadwanted to speak to our group for the past year.It finally worked out for him to come to ourNovember meeting. A great discussion with lotsof questions ensued. Issues that were brought upproved to be very informative for everyone. Wehave our holiday party in December. Then hope-fully, several people will think about registeringfor NAF’s annual conference in March in Seattle.

Los Angeles Ataxia Support GroupBy Cherilyn McLaughlin

On Saturday, November 8, the Los AngelesSupport Group met at the Westside Center forIndependent living for our annual pizza meeting.Joining us was Dr. Jen from UCLA, who led avery informative question-and-answer session.

Dr. Jen has established a reputation with ourcommunity of being supremely dedicated toproviding better diagnostics and post-diagnostictreatments. Her wish list right now includesopening an Ataxia Treatment Center at UCLA.This one-stop treatment center would make itpossible for testing and treatments to be coordi-nated at a single location, making it easier forpatients to accomplish these visits. The L.A.support group will do anything we can to helpDr. Jen achieve this end.

This meeting has always been our mostpopular session and this year was no exception.We packed in 22 enthusiastic support groupmembers, an all-time high for our group.

The next scheduled outing is a ChristmasHarbor Cruise/Dinner with the Casa Colina

Outdoor Adventures group. Our next regularmeeting will be on January 10 at the WCILlocation. This will be our yearly planning meet-ing, so please come out and contribute yourideas. Speakers for 2009 will be selected as well assome travel/outing plans. Your vote counts, soplease join us.

For information, contact Sherry McLaughlinat (626) 791-1558 or [email protected]. �

Getting Married?If you are getting married, you can support

the National Ataxia Foundation by register-ing with the I Do Foundation, billed as “theunion of marriage and charitable giving.”From honeymoons to invitations to wed-

ding gifts to charitable wedding favors, theI Do Foundation allows couples and theirguests to make wedding-related purchasesthat generate donations for charity.The I Do Foundation’s Charity Registry

service also makes it easy for guests tomake donations in lieu of gifts. All of theseservices are available free of cost atwww.IDoFoundation.org.The I Do Foundation was created in 2002

by a group of non-profit leaders dedicatedto developing new avenues of support forcharitable organizations.Check it out today, and be sure to select

National Ataxia Foundation as the benefici-ary of your charitable wedding.

SCA4 ResearchSamples for SCA 4 are being actively

collected at the University of California, SanFrancisco – Department of Neurology, Fu &Ptacek Laboratories.If you believe that you or a family member

may qualify and would be interested in par-ticipating in this study, please contactKristin Wong, Clinical Coordinator, at (415)502-3976 or [email protected].



Remembering NAF inYour WillThere have been a number of true heroes over

the years that have quietly made a significantimpact on the National Ataxia Foundation andthe ataxia families it serves. These are people whohave named NAF as a beneficiary in their will.

Most of the time the Foundation is unaware ofthe kind acts of these champions until after theyare gone, but each time we are deeply touchedand honored by their self less commitment inhelping others.

Over the years these individuals, who havechosen NAF as a beneficiary, have given any-where from a few thousand dollars to nearly onemillion dollars. Their forethought and benevo-lence has enabled the Foundation to supportpromising ataxia research and provide meaning-ful programs and services to ataxia families. It is

because of these quiet heroes that many researchstudies and programs have been funded. Theirkindness impacts ataxia families today and will befelt for years to come.

We are truly thankful for their humanitarianand compassionate acts and we will be eternallygrateful for the impact they have made in helpingataxia families. Their legacy lives on in the hopethey have given ataxia families.

Perhaps this is the time to consider adding theNational Ataxia Foundation in your will. �

Second AnnualRare Disease DayOn February 28, 2009 the National Ataxia

Foundation, as a Rare Disease Day Partner,will join with others around the world whowill be conducting a variety of activities toraise awareness of rare diseases and theneed for safe, effective treatments.Patient organizations, companies, med-

ical societies, government agencies, andothers with an interest in rare diseases andorphan products will participate in thisglobal effort.The special day was observed for the first

time last year in Europe. It is the hope oforganizers that this will become an annualglobal event, taking place on the last day ofFebruary each year.Watch for a link on the NAF website to the

global Rare Disease Day website which willprovide ideas for recognizing this importantday which will help in raising ataxia aware-ness.

Subjects Soughtfor Research

The laboratory of Dr. Margit Burmeister atthe University of Michigan is interested inrecruiting individuals and families with sus-pected genetic forms of unknown ataxia fortheir research.Participants should have either a clinically

novel form of ataxia or a typical form inwhich previous tests for common formswere negative (Dr. Burmeister does not doroutine testing).If interested, contact Dr. Burmeister at

[email protected], call (734) 647-2186 orvisit www.ataxia.org/pdf/Consent_subjects10-2008final1.pdf.

Individuals withSCA6 Needed

Adults with SCA6 are needed to partici-pate in a research study of cerebellar func-tion. Subjects should have a confirmeddiagnosis. Contact Eli, Research Coordina-tor, by phone at (410) 502-5816 or [email protected] for more information.



NAF Merchandise

To order, call (763) 553-0020, fax (763) 553-0167 or mail this completed form toNational Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447

Description Qty. Size Each Total

____________________________________________

____________________________________________

____________________________________________

____________________________________________

SUBTOTAL: ____________________________

Shipping: (Add) $5.00

(Outside U.S. add additional $4) _________

ORDER TOTAL: ___________________________

PLEASE ALLOW 4-6 WEEKS FOR DELIVERY

NAME: _____________________________________

ADDRESS: __________________________________

CITY ________________ STATE: ____ ZIP: _______

PHONE: _____________________________________

For credit card orders, please fill out the following information(you must include phone number and signature):

CIRCLE ONE: Visa Mastercard

NAME ON CARD: ____________________________

CARD #: ____________________________________

EXP DATE:___________________________________

SIGNATURE: _________________________________

Three Wheels by Rebecca Cummings BaldwinTrue personal, heart-warming story of a womanwith ataxia. A portion of the proceeds supports theNAF. Paperback. $15.99Ten Years to Live by Henry SchutThe story of the Schut family’s struggle with heredi-tary ataxia and the impact it had on this extendedfamily. Paperback, photos. $8.75Living with Ataxia by Martha Nance, MDCompassionate, understandable explanation withideas on how to live with ataxia. Paperback. $14Healing Wounded Doctor-Patient Relationshipsby Linda Hanner and contributor John J. Witek, MDOffers demonstrations of how effective dialog canhelp move patients and doctors to productiverelationships. Paperback. $10Friedreich’s Ataxia Research CookbookJulie Karjalahti of Savage, Minnesota has publishedthis cookbook to raise money for FA research.Includes recipes from around the U.S. $12Recipes and Recollections by Kathryn Hoefer SmithFull of delicious recipes and recollections, this bookis perfect for fund raisers. Proceeds go towards FAresearch. Paperback. $10Managing Speech & Swallowing Problemsby G.N. Rangamani, PdD, CCC-SLPA basic guide to understanding and managingspeech and/or swallowing problems. $7.50Evaluation and Management of Ataxic Disorders,an Overview for Physicians by Susan L. Perlman, MDA guide for physicians treating ataxia patients.Paperback. $5

Ballads of a Family Man CD10 songs in memory of Billa Ballard. $5 of purchaseprice goes to support the work of the NAF. $13“Together There is Understanding” VHS or DVDContinuation and expansion of “Together There isHope.” 50 minutes. VHS $20 or DVD $25

SHIRTS / MISCELLANEOUS

2008 Annual Membership Meeting T-ShirtDark blue with “Blazing a Trail in Research” logo.Various sizes. $10NAF Shoulder BagBlue with white NAF logo. 11x15x2 inches. $10NAF Polo ShirtRoyal blue w/ white embroidered NAF logo. $27.50NAF Denim ShirtDenim with white embroidered NAF logo. $27.50“Ataxia is not a foreign cab” T-ShirtWhite. New design. Sizes small to XXX-large. $10“Ataxia is not a foreign cab” SweatshirtAsh colored. Sizes small to XXX-large. $20NAF Baseball CapsWhite w/ blue embroidered NAF logo or blue w/white embroidered logo. Velcro strap for sizing. $10Window Cling or Bumper Sticker $1 ea. or 6 for $5NAF Ataxia Awareness Band Blue. One size. $2NAF Ataxia Awareness Ribbon MagnetBlue with white lettering/logo. $4Reusable Grocery Bag with NAF LogoEco-friendly, reusable grocery tote bag.Made in the USA of quality material. $5

BOOKS VIDEO / CD

NEW!



The following is a list of National Ataxia Foundation chapters, support groups and ambassadors. Theuse of these names, addresses and phone numbers for any purpose other than requesting informationregarding NAF or joining a chapter or support group is strictly prohibited.We encourage you to contact thechapter or group nearest you.

Chapters, Support Groupsand Ambassadors

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Chapters

Chesapeake ChapterCarl J. Lauter, President3200 Baker Circle, I -117Adamstown, MD 21710-9666(301) 644-1836E-mail: [email protected]: www.geocities.com/HotSprings/Oasis/4988/www.ataxia.org/chapters/Chesapeake/default.aspx

Louisiana ChapterCarla Hagler, PresidentPMB 510562250 Gause Blvd.Slidell, LA 70461(985) 643-0783E-mail: [email protected]: www.angelfire.com/la/ataxiachapterwww.ataxia.org/chapters/Louisiana/default.aspx

Mississippi ChapterCamille Daglio, PresidentP.O. Box 17005Hattiesburg, MS 39404E-mail: [email protected]/chapters/Mississippi/default.aspx

Support Groups

AlabamaBIRMINGHAM ATAXIA S.G.Becky Donnelly16 The Oaks CircleHoover, AL 35244(205) 987-2883E-mail: [email protected]/chapters/Birmingham/default.aspx

ArizonaPHOENIX AREA ATAXIA S.G.Rita Garcia2322 W. Sagebrush Dr.Chandler, AZ 85224-2155(480) 726-3579E-mail: [email protected]/chapters/Phoenix/default.aspx

TUCSON AREA ATAXIA S.G.Bart Beck7665 E. Placita Luna PreciosaTucson, AZ 85710(520) 885-8326E-mail: [email protected]: www.geocities.com/azataxiasgwww.ataxia.org/chapters/Tucson/default.aspx

CaliforniaLOS ANGELES ATAXIA S.G.Sid Luther339 W. Palmer, Apt. AGlendale, CA 91204(818) 246-5758E-mail: [email protected]: www.geocities.com/HotSprings/Falls/6629/www.ataxia.org/chapters/LosAngeles/default.aspxJim Fritz(310) 397-5208E-mail: [email protected]

Northern CA Ataxia S.G.Deborah Omictin26840 Edridge Ave.Hayward, CA 94544(510) 783-3190E-mail: [email protected]: www.geocities.com/casupport/www.ataxia.org/chapters/NorthernCalifornia/default.aspx

Orange County Ataxia S.G.Daniel Navar829 W. Gary Ave.Montebello, CA 90640(323) 788-7751E-mail: [email protected]: www.geocities.com/ocasgg/www.ataxia.org/chapters/OrangeCounty/default.aspx

San Diego Ataxia S.G.Earl McLaughlin2087 Granite Hills Dr.El Cajon, CA 92019(619) 447-3753S.G. e-mail: [email protected]’s e-mail: [email protected]: www.geocities.com/ataxia_sdasgwww.ataxia.org/chapters/SanDiego/default.aspx


ColoradoDENVER AREA ATAXIA S.G.Donna & Tom Sathre5902 W. Maplewood Dr.Littleton, CO 80123(303) 794-6351 Fax: (801) 640-8602E-mail: [email protected]/chapters/Denver/default.aspx

ConnecticutSee Tri-State Ataxia S.G. under New York

FloridaNORTHEAST FL ATAXIA S.G.June McGrane54 Troon TerracePonte Vedra, FL 32082-3321(904) 273-4644E-mail: [email protected]/chapters/NortheastFlorida/default.aspx

WEST CENTRAL FL ATAXIA S.G.Crystal (Chris) Frohna9753 Elm WayTampa, FL 33635(813) 453-1084E-mail: [email protected]: www.flataxia.orgwww.ataxia.org/chapters/TampaBay/default.aspx

GeorgiaGREATER ATLANTA AREA ATAXIA S.G.Greg Rooks320 Peters St., Unit 12Atlanta, GA 30313(404) 822-7451E-mail: [email protected]

Dave Zilles2400 Kimbrough Ct.Atlanta, GA 30350(770) 399-6710E-mail: [email protected]

Lynn Robinette1971 Sumter CourtLawrenceville, GA 30044(770) 982-0275E-mail: [email protected]/chapters/Atlanta/default.aspx

IllinoisGREATER CHICAGO AREA ATAXIA S.G.Craig Lisack410 W. Mahogany Ct., Unit 505Palatine, IL 60067(847) 496-7544E-mail: [email protected]

Richard Carr120 South Elm

Mount Prospect, IL 60056(847) 253-2920E-mail: [email protected]/chapters/Chicago/default.aspx

METRO AREA CHICAGO ATAXIA S.G.Christopher Marsh5633 N. Kenmore, Apt. 059Chicago, IL 60660(773) 334-1667E-mail: [email protected]://health.groups.yahoo.com/group/u-r-notalone/www.ataxia.org/chapters/ChrisMarsh/default.aspx

IndianaSOUTHERN IN ATAXIA S.G.Monica Smith1102 Ridgewood Dr. Apt.4Huntingburg, IN 47542(812) 630-4783E-mail: [email protected]/chapters/Louisville/default.aspx

LouisianaSee Louisiana Chapter

MaineME ATAXIA S.G.Kelley RollinsP.O. Box 113Bowdoinham, ME 04008E-mail: [email protected] Godbout56 King Rd.Lisbon, ME 04250E-mail: [email protected]: www.ataxiaME.comwww.ataxia.org/chapters/Maine/default.aspx

MarylandHOWARD COUNTY ATAXIA S.G.Tim Daly(410) 715-1241E-mail: [email protected]/chapters/HowardCounty/default.aspx

MassachusettsNEW ENGLAND ATAXIA S.G.Donna & Richard Gorzela45 Juliette St.Andover, MA 01810(978) 475-8072www.ataxia.org/chapters/NewEngland/default.aspx

MichiganDETROIT AREA ATAXIA S.G.Tanya Tunstull20217 Wyoming





Detroit, MI 48221(313) 820-6065E-mail: [email protected]/chapters/Detroit/default.aspx

MinnesotaTWIN CITIES AREA ATAXIA S.G.Lenore Healey Schultz2549 32nd Ave. S.Minneapolis, MN 55406(612) 724-3784E-mail: [email protected]/chapters/TwinCities/default.aspx

MississippiSee Mississippi Chapter

MissouriKANSAS CITY ATAXIA S.G.Jim Clark6605 N. HolmesGladstone, MO 64118(816) 468-7260E-mail: [email protected]/chapters/KansasCity/default.aspxLois Goodman17700 East 17th Terrace Court S #102Independence, MO 64057(816) 257-2428www.ataxia.org/chapters/KansasCity/default.aspx

MID-MISSOURI ATAXIA S.G.Roger Cooley1609 Cocoa CourtColumbia, MO 65202(573) 474-7232 before noonE-mail: [email protected]/chapters/RogerCooley/default.aspx

New JerseySee Tri-State Ataxia S.G. under New York

New YorkCENTRAL NY ATAXIA S.G.Linda Johnson2849 Bingley Rd.Cazenovia, NY 13035E-mail: [email protected]/chapters/CentralNewYork/default.aspx

TRI-STATE ATAXIA S.G.Jeannie Soto-ValenciaBeth Israel Dept. of Neurology, Suite 2R10 Union Square EastNew York, NY 10003(212) 844-8711Denise Mitchell

E-mail: [email protected]/chapters/Tri-State/default.aspx

North CarolinaSee South/North Carolina

OregonWILLAMETTE VALLEY ATAXIA S.G.Malinda Moore, CCC-SLPAlbany General Hospital1046 Sixth Ave. S.W.Albany, OR 97321(541) 812-4162 Fax: (541) 812-4614E-mail: [email protected]/chapters/Willamette/default.aspx

PennsylvaniaSOUTHEAST PA ATAXIA S.G.Liz Nussear(610) 272-1502E-mail: [email protected]/chapters/SEPennsylvania/default.aspx

South/North CarolinaCAROLINAS ATAXIA S.G.Cece Russell1305 Cely Rd.Easley, SC 29642(864) 220-3395E-mail: [email protected]/chapters/Carolinas/default.aspx

TexasHOUSTON AREA ATAXIA S.G.Angela Cloud9405 Hwy 6 SouthHouston, TX 77083(281) 693-1826E-mail: [email protected]/chapters/Houston/default.aspx

NORTH TEXAS ATAXIA S.G.David Henry Jr.7 Wentworth Ct.Trophy Club, TX 76262E-mail: [email protected]/chapters/NorthTexas/default.aspx

UtahUT ATAXIA S.G.Dr. Julia KleinschmidtMoran Eye Center, U of Utah50 N. Medical Dr.Salt Lake City, UT 84132(801) 585-2213E-Mail: [email protected]/chapters/Utah/default.aspx

VirginiaSee Chesapeake Chapter �

Chapters, Support Groups and AmbassadorsContinued from page 39



WashingtonSEATTLE AREA ATAXIA S.G.Milly Lewendon14104 107th Ave. NEKirkland, WA 98037(425) 823-6239Milly’s e-mail: [email protected]. e-mail: [email protected]/chapters/Seattle/default.aspx

Electronic Support GroupsE-NAF (ELECTRONIC NAF) S.G.Jim Kardos1283 Westfield SWNorth Canton, OH 44720(330) 499-4060E-mail: [email protected]/chapters/E-NAF/default.aspx

International Support Groups

Canada — British ColumbiaATAXIA SOCIETY VANCOUVERGlenn ter Borg#204-7460 Moffatt Rd..Richmond, B.C. V6Y 3S1(604) 278-0017E-mail: [email protected]: www.bcataxia.orgwww.ataxia.org/chapters/Vancouver/default.aspx

IndiaSAMAG (INDIA ATAXIA S.G.)Chandu Prasad George.CH,H-No: 5-95/20, Sri Laxmi Nagar Colony, Old AlwalSecunderabad, 500 010 IndiaPhone: 0091-40-27961269Mobile: 0091-9949019410 Fax: 091-040-27971043E-mail: [email protected]: [email protected]/chapters/Chandu/default.aspx

Ambassador Listing

AlabamaDianne Blain Williamson123 Leigh Ann Rd.Hazel Green, AL 35750(256) 828-4858E-mail: [email protected]/chapters/DianneWilliamson/default.aspx

Millard H. McWhorter IIIP.O. Box 1457Andalusia, AL 36420(334) 222-3423E-mail: [email protected]

www.ataxia.org/chapters/MillardMcWhorter/default.aspx

ArkansasJudy and David King17 Sanchez PointHot Springs Village, AR 71909E-mail: [email protected]/chapters/JudyKing/default.aspx

CaliforniaBarbara Bynum3801 W. BaileyMerced, CA 95340(209) 383-1275E-mail: [email protected]/chapters/BarbaraBynum/default.aspx

Mike Fernandes7251 Brentwood Blvd. #114Brentwood, CA 94513(925) 516-6906E-mail: [email protected]/chapters/MikeFernandes/default.aspx

Mike Betchel315 W. Alamos, Apt. 141Clovis, CA 93612(559) 281-9188E-mail: [email protected]/chapters/mike/default.aspx

ConnecticutTerre Di Placito107 Barton St.Torrington, CT 06790(860) 489-5092www.ataxia.org/chapters/TerreDiPlacito/default.aspx

FloridaChristina Sugars302 Beach Dr.Destin, FL 30541(850) 654-2817E-mail: [email protected]/chapters/ChristinaSugars/default.aspxJim Henderson3212 Lee Shore LoopOrlando, FL 32820(407) 568-9092E-mail: [email protected]/chapters/JimHenderson/default.aspxThomas Clouse, MD1604 Cheshire Circle S.Lehigh Acres, FL 33936(239) 989-5150E-mail: [email protected]/chapters/ThomasClouse/default.aspx




GeorgiaKristie Adams258 Beaufort Rd.Savannah, GA 31419E-mail: [email protected]/chapters/KristieAdams/default.aspx

IllinoisElaine Darte36 Lindorf Dr.Belleville, IL 62223(618) 397-3259E-mail: [email protected]/chapters/SouthernIllinois/default.aspxKevin Donnelli6525 Thomas ParkwayRockford, IL 61114(815) 633-8620E-mail: [email protected]/chapters/KevinDonnelli/default.aspx

IowaEmily Medina3720 Patricia Dr. #1Urbandale, IA 50322(515) 727-8713E-mail: [email protected]: [email protected]/chapters/EmilyMedina/default.aspx

KentuckyJanice Johnson8555 Brownsville Rd.Brownsville, KY 42210(270) 597-3854www.ataxia.org/chapters/JaniceJohnson/default.aspx

MarylandKaren Rosenberger6411 Spring Forest Rd.Frederick, MD 21701(301) 682-5386E-mail: [email protected]/chapters/KarenRosenberger/default.aspx

MichiganLynn K. Ball3778 Kinview NWGrand Rapids, MI 49534(616) 735-2303E-mail: [email protected]/chapters/LynnBall/default.aspx

MinnesotaLori Goetzman5179 Meadow Dr.

Rochester, MN 55904(507) 282-7127E-mail: [email protected]/chapters/LoriGoetzman/default.aspx

Julie Schuur218 Cashin Dr.Luverne, MN 56156(507) 283-2555E-mail: [email protected]/chapters/JulieSchuur/default.aspx

MissouriSusan L. Strode, PhD12 Jackson #811BJefferson City, MO 65101(573) 659-4759E-mail: [email protected]: www.dr-susie.com

New YorkValerie Ruggiero36 West Redoubt Rd.Fishkill, NY 12524(845) 897-5632E-mail: [email protected]/chapters/ValerieRuggiero/default.aspx

Diane P. Hall210 E. Utica St.Buffalo, NY 14208(716) 881-0677www.ataxia.org/chapters/DianeHall/default.aspx

North CarolinaNorma Bryant5309-B Wayne St.Raleigh, NC 27606(919) 900-8768E-mail: [email protected]

OhioJames Kardos1283 Westfield S.W.North Canton, OH 44720(330) 499-4060E-mail: [email protected]/chapters/E-NAF/default.aspx

Joe MillerBox 148Mesopotamia, OH 44439(440) 693-4454E-mail: [email protected]/chapters/JoeMiller/default.aspx

Cecelia Urbanski7852 Country CourtMentor, OH 44060(440) 255-8284E-mail: [email protected]/chapters/CentralOhio/default.aspx �

Chapters, Support Groups and AmbassadorsContinued from page 41



OklahomaMark Dvorak915 ThistlewoodNorman, OK 73072(405) 447-6085E-mail: [email protected]/chapters/Ambassador/default.aspxDarrell Owens5700 S.E. Hazel Rd.Bartlesville, OK 74006(918) 331-9530E-mail: [email protected]/chapters/DarrellOwens/default.aspx

PennsylvaniaWilliam Alden Lee, MBA4700 Oakhurst Blvd., #316Harrisburg, PA 17110(717) 652-3512E-mail: [email protected]/chapters/WilliamAldenLee/default.aspx

TexasJose Julio Vela6702 Long MeadowCorpus Christi, TX 78405(361) 993-9006www.ataxia.org/chapters/JoseJulioVela/default.aspxBarbara Pluta356 Las Brisas Blvd.Seguin, TX 78155-0193(830) 557-6050E-mail: [email protected]/chapters/BarbaraPluta/default.aspxDana LeBlanc2801 W. Sunset #59HOrange, TX 77630(409) 883-5570E-mail: [email protected]: http://ladyd1973.tripod.com/index.htmlwww.ataxia.org/chapters/GoldenTriangle/default.aspx

VirginiaDick Sargent(703) 321-9143 E-mail: [email protected]/chapters/DickSargent/default.aspx

WashingtonLinda JacoyPO Box 19045Spokane, WA 99217(509) 482-8501www.ataxia.org/chapters/Spokane/default.aspx

International Ambassadors

American SamoaBob CoulterPO Box 9062

American Samoa 96799(684) 688-2437www.ataxia.org/chapters/BobCoulter/default.aspx

AustraliaRenee Moore (Nee McCallum)44 Lotherton WayHocking, W. Australia 606561-8-9404-7052E-mail: [email protected]/chapters/ReneeMoore/default.aspx

CanadaSusan M. Duncan#401-1330 Richmond Rd.Ottawa, Ontario K2B 8J6(613) 820-7990E-mail: [email protected]/chapters/SusanDuncan/default.aspx

Prentis Clairmont299 Somerset West, Apt. 402Ottawa, Ontario K2P 2L3(613) 864-8545E-mail: [email protected]/chapters/PrentisClairmont/default.aspxTerry Greenwood10 Saxon BayWinnipeg, Manitoba R3Y 1G8(204) 488-4155E-mail: [email protected]/chapters/TerryGreenwood/default.aspx

IndiaAbhinav Kedia207 L Model Town, Near Hero GroundPanipat–132103Haryana, IndiaPhone: 0091-0180-2681157Mobile: 0091-0-9466355238E-mail: [email protected]/chapters/AbhinavKedia/default.aspx �

Vehicle DonationThe donation of your vehicle to the Na-

tional Ataxia Foundation will help supportthe important work that is being done on be-half of all those who are affected by ataxia.

To donate your car, truck, or motor home,please call the NAF office at (763) 553-0020. Your vehicle will be picked up at yourhome, office, or other place that you desig-nate. Be sure to have the certificate of titlewith the vehicle.


Thursday, January 8, 2009Tri-State Ataxia Support Group MeetingPhillips Ambulatory Care Center (PACC), 10 UnionSquare E., New York, NY. To RSVP or for moreinformation contact Jeannie Soto-Valencia at(212) 844-8711. www.ataxia.org/chapters/Tri-State/default.aspx

Saturday, January 10, 2009Los Angeles Area Ataxia S.G. MeetingWestside Center for Independent Living, 12901Venice Blvd., Venice Beach, CA. Contact SidLuther for more information at [email protected]. This meeting will be a planningmeeting. www.ataxia.org/chapters/LosAngeles/default.aspx

North Texas Ataxia Support Group Meeting10 a.m. – noon at the Los Colinas Medical Cen-ter, 6800 MacArthur Blvd. at Hwy 161, Irving, TX.Parking is free. Enter through main building andfollow the signs. Contact David Henry Jr. [email protected] for more information.www.ataxia.org/chapters/NorthTexas/ default.aspx

West Central Florida Ataxia S.G. Meeting1–3 p.m. at Feathersound Community Church,13880 Feathersound Dr., Clearwater, FL. Thismeeting will include a roundtable discussion onthe benefits of massage therapy. Contact CrystalFrohna at (813) 453-1084 or [email protected] more information. www.ataxia.org/chapters/TampaBay/default.aspx

Saturday, January 17, 2009San Diego Ataxia Support Group MeetingSharp Rehabilitation Center, 2999 Health CenterDr. on the East side of Hwy. 163 betweenGenessee Ave. and Mesa College Dr., behindSharp Memorial Hospital. Plenty of free parking.Contact Earl McLaughlin at (619) 447-3753or [email protected] for more information.www.ataxia.org/chapters/SanDiego/default.aspx

Sunday, January 18, 2009Chicago Area Ataxia Support Group Meeting1 p.m. at the Good Samaritan Hospital – WhiteOak Room, 3815 Highland Ave., Downers GroveIL. For more information contact Craig Lisack at(847) 496-7544 or [email protected]. www.ataxia.org/chapters/Chicago/default.aspx

Tuesday, January 20, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Roseville at1910 West County Road D, Roseville, MN 55112.For more information contact Lenore Schultz [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Saturday, February 14, 2009Kansas City Area Ataxia Support Group2–4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx

North Texas Ataxia Support Group Meeting10 a.m. – noon at the Los Colinas Medical Cen-ter, 6800 MacArthur Blvd. at Hwy 161, Irving, TX.Parking is free. Enter through main building andfollow the signs to the classrooms.Contact DavidHenry Jr. at [email protected] for more in-formation. www.ataxia.org/chapters/NorthTexas/default.aspx

Tuesday, February 17, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Roseville at1910 West County Road D, Roseville, MN 55112.For more information contact Lenore Schultz [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Saturday, February 21, 2009Orange County Ataxia Support Group Meeting1:30 p.m. – 4 p.m. at Orange Coast MemorialMedical Center (in the basement, next to thecafeteria), 9920 Talbert Ave., Fountain Valley,CA. For more information contact Daniel Navarat [email protected]. www.ataxia.org/chapters/OrangeCounty/default.aspx

Saturday, February 28, 2009Second Annual Rare Disease DayThis is an important opportunity to raiseawareness and focus attention on rarediseases as a public health priority.www.rarediseases.org


Calendar of Events

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Monday, March 2, 2009New England Ataxia Support Group MeetingNoon–3pm. Location TBD, For more informationcontact Donna or Rich at (978) 475-8072. www.ataxia.org/chapters/NewEngland/default.aspx

Thursday, March 12, 2009Tri-State Ataxia Support Group meetingPhillips Ambulatory Care Center (PACC), 10 UnionSquare E., New York, NY. To RSVP or for moreinformation contact Jeannie Soto-Valencia at(212) 844-8711. www.ataxia.org/chapters/Tri -State/default.aspx

Saturday, March 14, 2009Denver Area Ataxia Support Group Meeting1–4 p.m. at the Swedish Hospital and MedicalConference Center (Pine B&C), 501 East Hamp-den Ave., Englewood, CO. For more informationcontact Tom Sathre at [email protected] (303) 794-6851. www.ataxia.org/chapters/Denver/default.aspx

Kansas City Area Ataxia Support Group2–4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx

Los Angeles Area Ataxia Support Group MeetingWestside Center for Independent Living, 12901Venice Blvd., Venice Beach, CA. Contact SidLuther for more information at [email protected]. www.ataxia.org/chapters/LosAngeles/default.aspx

North Texas Ataxia Support Group Meeting10 a.m. – noon at the Los Colinas Medical Cen-ter, 6800 MacArthur Blvd. at Hwy 161, Irving, TX.Parking is free. Enter through main building andfollow the signs to the classrooms. Contact DavidHenry Jr. at [email protected] for moreinformation. www.ataxia.org/chapters/NorthTexas/default.aspx

SE Pennsylvania Ataxia Support Group MeetingThe SE PA Support Group is no longer meetingmonthly. The group will meet the second Satur-day of March, May, July, September, and Novem-ber. You must RSVP to the meetings. To RSVP orfor more information please contact Liz Nussearat (610) 272-1502 or [email protected]. www.ataxia.org/chapters/SEPennsylvania/default.aspx

Sunday, March 15, 2009Chicago Area Ataxia Support Group Meeting1 p.m. at the Good Samaritan Hospital – WhiteOak Room, 3815 Highland Ave., Downers GroveIL. For more information contact Craig Lisack at(847) 496-7544 or [email protected]. www.ataxia.org/chapters/Chicago/default.aspx

Tuesday, March 17, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Roseville at1910 West County Road D, Roseville, MN 55112.For more information contact Lenore Schultz [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Saturday, March 28, 2009West Central Florida Ataxia S.G. Annual PicnicNoon–4 p.m. at Upper Tampa Bay Park, a 2,144-acre nature preserve. We will have a private pic-nic area not open to the public adjacent to theNature Center. There will be a program on nativeFlorida snakes and we will take a ride/walk on aboardwalk that takes us out into wetlands to lookat plants indigenous to Florida. The boardwalktakes us back to the Nature Center, wherehandicap facilities are located as well as exhibits.Contact Crystal Frohna at (813) 453-1084 [email protected] for more information. www.ataxia/org/chapters/TampaBay/default.aspx

Saturday, April 11, 2009Kansas City Area Ataxia Support Group2–4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx

North Texas Ataxia Support Group Meeting10 a.m. – noon at the Los Colinas Medical Cen-ter, 6800 MacArthur Blvd. at Hwy 161, Irving, TX.Parking is free. Enter through main building andfollow the signs to the classrooms.Contact DavidHenry Jr. at [email protected] for more in-formation. www.ataxia.org/chapters/NorthTexas/default.aspx

Northern California Ataxia Support Group Meeting11:30 a.m. –3:00 p.m. at Our Savior’s LutheranChurch, 1035 Carol Lane, Lafayette, CA. For more




NAF Exhibits at Society forNeuroscience Annual Meeting

By Carolyn DavisAn estimated 34,000 people from around the

world attended the 38th annual meeting of theSociety for Neuroscience (SfN) held November15-19 in Washington, DC. Around 30,000 wereparticipants in the workshops, lectures, andsymposia, while the re-maining were exhibitors.

The SfN is a non-profit organization ofphysicians and scien-tists who study the brainand nervous system.Current membership isover 38,000 individualswith 117 local chaptersacross the globe. Theirannual meeting is anopportunity to networkand share informationand research, which isthe Society’s main goal.

The NAF booth was staffed by volunteers fromthe Chesapeake Chapter and the Ataxia Centerat Johns Hopkins University. Researchers andstudents from across the United States andseveral other countries stopped by the booth.We spoke with people from China, Holland, Italy,England, Germany, and Iceland, just to mentiona few. Their knowledge of ataxia varied, with

some being thoroughly familiar with it, seeingpatients and/or doing research, and othersreceiving their first introduction. NAF’s roles inpatient support and in research were described,with the research grant application processbeing a frequent topic of discussion.

Thanks are due toScot Johnson for theset-up and tear-down ofthe booth and to allthose who spent timetalking with meeting par-ticipants who came by.The Chapter membersincluded Scot Johnson,Libby Labash, JeneanMcKay, Glenn Davis,Carolyn Davis, RickDavis, John Lane, DickSargent, and MarthaSargent. Serving at thebooth from Johns Hop-

kins University were Dr. Sarah Ying, KatieMcGuire, Clinic Coordinator of the Ataxia Center,Katie Loya, and Katie FitzGibbon, an AtaxiaStudent Ambassador.

An additional thank you goes to Carl Lauter forhis behind-the-scenes work in recruiting volun-teers, setting up the schedule, and his words ofencouragement.

information contact Deb Omictin at [email protected] or (510) 783-3190. www.ataxia.org/chapters/NorthernCalifornia/default.aspx

Saturday, April 18, 2009Orange County Ataxia Support Group meeting1:30 p.m. – 4 p.m. at Orange Coast MemorialMedical Center (in the basement, next to thecafeteria), 9920 Talbert Ave., Fountain Valley,CA. For more information contact Daniel Navarat [email protected]. www.ataxia.org/chapters/OrangeCounty/default.aspx

Sunday, April 19, 2009Abilities Expo NY MetroApril 17-19 at the New Jersey Convention andExpo Center, 97 Sunfield Ave., Edison, NJ.www.abilitiesexpo.com

Tuesday, April 21, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Roseville at1910 West County Road D, Roseville, MN 55112.For more information contact Lenore Schultz [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Calendar of EventsContinued from page 43

�

Carolyn Davis, Glenn Davis, and Rick Davis staff theNAF booth at the SfN meeting in Washington D.C.


LydmilaAbrosimova

Lynn BallSandee BerstKim BishopGary BlasiusMichael BohleStanley BohleTina BoudreauxWalter BremerDavid BrownEdward BurmanJim BurmanRobert BurmanNancy CanoJane CarmanChris CaseySarah ChamberlainJohn ClossBeatrice CoutureJudy CoxJanet CoyneAllan CrawfordKaren CrawfordMarcia CyganowskiBetty DampGranvilleDeane, Jr.

Charlotte DePewJanice DeSawConstanceDiVincentis

StephenDoroskewicz

Olivia DouglassDenise DrakeNaomi DrozSandy DudzicJohn DunhamDiane DusbiberMelvin EarnhartEd EnsmingerRobert Evans

Joseph FalconKatherine FalconCharity FalkTrinity FalkMichael FernandesRichard GehronBryan Gervais, Sr.Carla GnitzcavichPenny GolminasMabel GrafBrenda GranerLawrence GranerPaschal GuercioCarol HaukosJoan HayMike HealyTricia HoganJana HublerR.D. HuntKeith HunterLisa JaffeMarian JohnsonYvonne JohnsonR. JurasekRobert KeithlySharon KeysJordan KohlMarcia KohlFred KosierackiJamie KosierackiChris KrauseCarol KreidlerKarina KrillaBrant KruenNorman LaBarreRita LabascioDonald LaputkaRodger LarsenBarbara LasterDwayne LeBlancStacy LegerMilly LewendonTony Lewendon

Alice LisackJoe LisackS. LowryDustin LugerAdam LukewCarly MagnusonPhyllis MarinoLisa MarshAngelo MatriscianoMaury McDonaldTed McFaddenCharleyMcLaughlin

Earl McLaughlinSherry McLaughlinGregory MeadDiane MitchelMinnie MoliniDolores MorelloMargaret MorrisCharles MurphyBruce NanningaCharles Nesby, Jr.Harvey NevisMelanieNodthauser

Pinkie OliverDeb OmictinKing OmictinJohn OndracekJoyce OrrDarrell OwensJoe ParkerNorma PayneGregory PettitEric PogulisDawn PollakIkue PollakDavid PriceRolando RamosAngela RattsSteve RattsBrett Reed

Janet RileyGeneva RoemkeMatthew RootAmy RosemergyJudy RosemergyBilly RosemergyDavid RoyGreg RussellJames RussellDonaldSanta Croce

Yuko SatoKenneth SaundersEdward SchefflerJosephinaSchembre-McCabe

Mary SchmidtBrunoSchraermeyer

LeticiaSchraermeyer

Derek SemlerCollin ShannonCynthia ShannonKevin ShannonCarole SilvaRobin SmithWindy SmithAbbie SpellmanTwila Spencer

Joanne SprayJoey StaigerMarilyn StevensRollin StoddardJohn SurabianSatoko SweattErnie TalaricoErnest Talarico, Jr.Tiffinay Talarico-Compiano

Quentin ThellBernice ThienMark TorvinenGert TougasRudy Van't HoffVirginia VerstegenMegan WalchMichael WalchChester WaligundaPriscilla WallackSarah WersanDavid WestrickAnna WidingYoshi WirksJack WoodJoan WoodwardBetty WorfelRocio WuThomas ZaharisJon ZillesMike Zimmerman


Memorials and InYour HonorThe National Ataxia Foundation is grateful to those who have made contributions in memory or in honor

of their friends and families whose names are listed below. This list reflects contributions made fromSeptember through October 2008. We are sorry that we cannot separate the memorial contributions fromthose made in honor of someone, as sometimes the person making the contribution does not let usknow if the contribution is a memorial or in honor of their friend or family member.

�

CFC NumberThe National Ataxia Founda-

tion’s Combined Federal Cam-paign (CFC) number is 10752.

This program provides a con-venient way to donate to the Foun-dation, and provides great benefitto those with ataxia.


Non-ProfitOrganizationU.S. PostagePAID

Madison, SDPermit No. 32

National Ataxia Foundation2600 Fernbrook Lane, Suite119Minneapolis, MN 55447-4752(763) 553-0020

GIFT – HONOR – MEMORIAL

A contribution given in memory of a friend orrelative is a thoughtful and lasting tribute, asare gifts to honor your friends or family. AGift Membership is a wonderful gift to a friendor relative for special occasions like birthdays,graduations, anniversaries, and holidays. NAFwill acknowledge your gift without reference tothe amount.

Simply fill out this form and mail with your checkor credit card information to the National AtaxiaFoundation.

Honor/Memorial envelopes are available free ofcharge by writing or calling NAF.

My contribution is:

� In Memory � In Honor � Gift Membership

Name ________________________________

Occasion _____________________________

Send Acknowledgment Card to:

Name ________________________________

Address ______________________________

City/State/Zip __________________________

From:

Name ________________________________

Address ______________________________

City/State/Zip __________________________

MEMBERSHIP

Yes, I want to help fight ataxia! Enclosed ismymembership donation, which enables NAF tocontinue to provide meaningful programs andservices for ataxia families. (Gifts in US Dollars)� Lifetime membership $500 +

Annual memberships:� Patron membership $100-$499� Professional membership $45 +� Individual $25 +� Household $45 +� Addresses outside the U.S. please add $15

Your Name ____________________________

Address ______________________________

City/State/Zip __________________________

E-Mail ________________________________

PAYMENT INFORMATIONGifts are tax deductible under the fullest extent of the law.

� Check. Please make payable to theNational Ataxia Foundation.

Total Amount Enclosed $ _________________

Credit Card: � Visa � Master CardName on Card _________________________Card # _______________________________Exp. Date_____________________________Signature _____________________________Phone Number ________________________

Is your address correct? Are you receiving more than one issue of Generations? If there are anychanges that need to be made, please call NAF at (763)553-0020 or e-mail [email protected]. Thank you!

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