scilife, vol. 4, no. 4

www.spinalcord.org

Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.

Vol. 4, No. 4July/August 2007

By Santina Muha,SCILife Staff Writer

Delegates from around the world unitedearlier this year to discuss disabilityrights, media portrayals of people with

disabilities, partnerships with other coun-tries and perhaps most significantly, the re-cent opening for signature of the UnitedNations Convention on the Rights of Per-sons with Disabilities. These, and other im-portant conversations, were part of thesecond International Forum on Childrenwith Disabilities in Doha, the capital ofQatar.

NSCIA Executive Director and CEOMarcie Roth returned to Qatar for the sec-ond time to participate on behalf of NSCIA.

The forum was hosted by the ShafallahCenter for Children with Special Needs, aschool and rehabilitation center with morethan 350 students. NSCIA has participatedin the Shafallah Forums because of theirclear commitment to meeting the educa-tional, family and employment needs of

children with disabilities in the Middle Eastand globally. Attendees included seven FirstLadies who were coming together to talkabout their country’s participation in the U.N. Convention, and in promoting therights of people with disabilities worldwide.These influential women from Bulgaria,

Rwanda, Panama, the European Union andAlbania were led by Cherie Booth, wife ofTony Blair, former Prime Minister of GreatBritain. Hosting the event was Her High-ness Sheikah Moza Bint Nasser Bin Abdal-lah Al-Misned, who is the consort of theEmir of Qatar. Anthony Kennedy Shriverwas a keynote speaker, and was also there tolaunch the International Best Buddies pro-gram that will be serving people with dis-abilities in the Middle East. Representativesfrom Disabled Peoples International werepresent, as well as Ambassador Luis Galle-gos of Ecuador, who hosted NSCIA’s De-cember gala honoring the InternationalAwardees of the Ninth International Con-gress on Children, Youth and Families withDisabilities. Ambassador Gallegos was alsothe chairman of the ad hoc committee thatdrafted the U.N. Convention and the re-

cipient of the American Association of Peo-ple with Disabilities 2007 Justice For AllAward.

In the forum’s opening keynote speech,Gallegos said the Convention should beused “to create a society based on justice andequity, where differences among individualswill not hinder their full enjoyment of uni-versally recognized human rights.” Ms.Booth, a longtime advocate for civil rightsand an active member of a disability rightsgroup in Great Britain, told forum partici-pants, "I am passionately committed toachieving equality and social justice - muchhas now been done to tackle discrimination

and oppression on grounds of gender andrace, although much is still to be done. Yetwe have barely started to tackle the inequal-ities faced by disabled people.”

Greg Smith, speaker, author, televisionhost and subject of the documentary film,“On A Roll: Family, Disability and theAmerican Dream,” also attended the event.He was very impressed. “The Shafallah Cen-ter is an awesome place - state of the arttechnology and beautiful accessible architec-ture. I was encouraged by the fact that somuch money was being spent on peoplewith disabilities in Qatar.”

Continued on page 14


Soul music legend Teddy Pendergrass hasa lot to be thankful for. Many peopleremember his highly successful musical

career which began in the early 1970s. And,Teddy became even more widely known inthe SCI/D community when, in 1982, hemade headlines after acquiring a spinal cordinjury in an automobile accident.

The road since then has been bumpy,but 25 years later, on June 10, the five-timeGrammy nominee remembered and hon-ored those who helped him through thehard times with a concert in which he per-

formed live for the firsttime since 2003.

“Teddy 25 – A Celebra-tion of Life, Hope and Pos-sibilities” was held at theKimmel Center in Philadel-

phia, Pa. Honorees included people in theentertainment industry, the medical field,family and friends, and professionals. Pro-ceeds from the event went to the Teddy Pen-dergrass Alliance (TPA), a nonprofitorganization founded by Pendergrass tohelp provide educational and occupationalopportunities for people living with SCI.

The impressive list of performers andpresenters included Patti LaBelle (who wasalso an honoree), Bill Cosby, basketball starJulius Erving (aka Dr. J), Vivian Green,Kindred: The Family Soul, Stephanie Mills,Melba Moore, Musiq Soulchild, Phi-ladanco, Joe “Butterball” Tamburro, DyanaWilliams and Pendergrass himself. Other

Continued on page 8

Teddy Pendergrass CelebratesLife, Hope and Possibilities

International Forum on Children with Disabilities Brings Focus to Global Issues

Honoree Patti LaBelle and Host Mo’Niqueshow Teddy Pendergrass love after the Gala.

Greg Smith and Marcie Roth both traveled to Qatar for thesecond International Forum on Children with Disabilities.

2 Ju ly /August 2007

By Terry Moakley

Although the Americans with DisabilitiesAct (ADA) does not explicitly require thattaxi vehicles must be wheelchair-accessi-

ble, several years ago the New York City Taxisfor All Campaign was able to identify morethan 75 U.S. communities where such serviceoperates. Accessible taxis transport wheelchairusers in large cities like Boston, Chicago,Houston, Las Vegas, Miami, and San Fran-

cisco, with varyingdegrees of success.For instance, severalChicagoans haveinformed us that it’sdifficult to get ac-cessible taxi trips ina timely manneroutside the down-town business dis-trict, and I have

experienced long waiting times for an accessi-ble taxi to arrive on several occasions in LasVegas.

At the same time, major urban centerslike Atlanta, Baltimore, Dallas, Philadel-phia, and Washington, D.C. reportedlyhave no wheelchair-accessible taxis at all.

I’ve used wheelchair-accessible cabs inFort Lauderdale and New York, as well as inVancouver, Victoria, and Montreal, Canada.Where I’ve used accessible taxis in Canada,the service has been safe, convenient, and re-liable. Most of my Las Vegas accessible taxitrips have been good once they showed up.In New York my experience with one of thefew for-hire vehicle companies with accessi-ble minivans started out well, however, onmy third trip request, they said that theycould take me to my destination, but thatthey could not get me back home. This isnot good enough!

So are we making progress on taxi acces-sibility in this country? Despite my own upand down experience, I believe so and hereare a few reasons why.

In April in New York City, the FederalTransit Administration (FTA) sponsored anational accessible taxi summit that in-cluded advocates, local government taxi reg-ulators, taxi operators and taxi industrytrade associations from across the nation.Ideas like incentives to begin taxi service,driver training and enforcement were dis-cussed and best practices were put on thetable. Getting stakeholders on the accessibletaxi issue together in one room gave all sidesa better understanding of the issues.

A second forward step is a new part ofthe federal transportation law called “NewFreedom.” Regulations implementing it be-came effective May 1. New Freedom fundsare available to purchase accessible taxis. Tomake it work, however, local disabilitygroups must organize to push for this result.The New Freedom provisions are perma-nent, which is important, as this lends itselfto long-range funding of accessible taxi ex-pansion in any community.

The development of the first wheel-

chair-accessible sedan taxi prototype -- the“Standard Taxi” -- is a third reason for opti-mism. Its access features, including a rampand an upfront wheelchair seating location,will be built-in on the assembly line. TheStandard Taxi is designed to be durable, too-- a high priority in the taxi industry because80 percent of taxis in operation in the U.S.begin their taxi life as used vehicles. Taxismust hold up under constant use and theymust be easy to maintain -- yet another fea-ture of the Standard Taxi design.

Manufacturing of the Standard Taxi willstart in late 2008, and it is expected to sell ata price that is competitive with other sedanvehicles commonly used as taxis today. I be-lieve that it will lead to a rapid increase inthe numbers of accessible taxis in a veryshort time.

The Standard Taxi builders will alsomanufacture an ADA paratransit version of

their vehicle, and this brings me to my finalreason for hope that we will soon have moreaccessible cabs. Remember, it was the FTAthat sponsored the New York taxi confer-ence mentioned above. Why? Part of thereason is the reality that public transporta-tion agencies across the country are spend-ing a lot of money every year on ADAparatransit. So, the purchase of standard ve-hicles as ADA paratransit vehicles shouldsave local transportation agencies both cap-ital and operating dollars.

In addition, many people feel that thebroader availability of accessible taxis will re-duce the demand for ADA paratransit serv-ice. I’m one of them. Wouldn’t it be easier topick up the phone and call a local cab com-pany for a spontaneous accessible taxi trip?I believe that people with disabilities inevery city and town in the country deserveno less.

Terry Moakley is director of special projectsat the New York City based United SpinalAssociation. Moakley manages Taxis for All,a North America online advocacy project,found at www.unitedspinal.org. From1997 through 2006, he chaired the NewYork Taxis for All Campaign coalition.

Spinalcord.org is looking for interested

volunteers to moderate our on-line forum

Please contact us at [email protected]

3Ju ly /August 2007

SCILife is dedicated to the presentation of news concerning peo-ple with spinal cord injuries caused by trauma or disease.We welcome manuscripts and articles on subjects related tospinal cord injuries or the concerns of persons with disabilitiesfor publication, and reserve the rights to accept, reject, or alter alleditorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self ad-dressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertisingpublished in SCILife do not imply endorsement of organizations,products or services.

SCILife is a publication of the National Spinal Cord Injury Association

SCILife STAFFMANAGING EDITOR: K. Eric LarsonSENIOR EDITOR: Mike ErvinSTAFF WRITER: Santina MuhaDESIGN AND LAYOUT: Nikolai AlexeevADVERTISING SALES: Joyce Parker DATA INPUT: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFCHIEF EXECUTIVE OFFICER: Marcie Roth CHIEF OPERATING OFFICER: K. Eric LarsonRESOURCE CENTER MANAGER: Bill FertigRESOURCE CENTER ASSOCIATE: Daniela CastagninoRESOURCE CENTER ASSOCIATE: Charleene FrazierNATIONAL CASE MANAGER: Jason HurstCOMMUNICATIONS ASSOCIATE: Santina MuhaWEB SERVICES/PUBLISHING: J. Charles Haynes, JDWEBMASTER: Nikolai Alexeev

BOARD OF DIRECTORS Executive CommitteeACTING PRESIDENT: Patrick MaherIMMEDIATE PAST PRESIDENT: Harley ThomasCHAIR, EXECUTIVE COMMITTEE: David BoningerVICE-PRESIDENT FOR MEMBERSHIP: John FioritiVICE-PRESIDENT FOR CHAPTERS: Deb MyersVICE-PRESIDENT FOR DEVELOPMENT: Milita DolanSECRETARY/TREASURER: Janeen EarwoodBUSINESS ADVISORY COMMITTEE LIAISON: Tari Hartman SquireCEO/EXECUTIVE DIRECTOR: Marcie Roth

Directors Pamela Ballard, MDTapan Banerjee, Ph.D.Jayne KleinmanPaul MortensenChristine N. Sang, M.D., M.P.H

General CounselLeonard Zandrow, Esquire

SCILife PUBLISHERSPUBLISHER: Charles W. HaynesPUBLISHER: J. Charles Haynes, JD

SCILife is a publication of theNational Spinal Cord Injury Association1 Church St., #600Rockville, MD 20850

If you have any questions related to your membership with NSCIA, or wouldlike to join, contact us atHDI Publishers, PO Box 131401, Houston, TX 77219-1401,e-mail: [email protected], fax: 713.526.7787, or phone us toll free at 800-962-9629.

For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401Our voice phone is 713.526.69.00fax: 713.526.7787Email us at [email protected] or go to www.spinalcord.org.

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SCILife, HDI Publishers, PO Box 131401, Houston,TX 77219-1401,

tel 713.526.6900 fax 713.526.7787,

e-mail: [email protected]

SCILife © 2007

Assessing the State of Accessible Taxis guest editorial

If you have a spinal cord injury or have been diagnosed with multiple sclerosis, and suffer

from incontinence resulting from an overactive bladder, we invite you to fi nd out if you qualify

for the Dignity Study. The purpose of the study is to determine the effectiveness and safety

of an investigational medication for controlling symptoms of overactive bladder in patients

with these conditions. Physicians in your area are conducting the Dignity Study. Investigational

study medication, medical exams, and lab tests will be provided to you at no charge.

To learn more, and to fi nd a participating physician

in your local area, visit www.DignityStudy.com.

IS AN OVERACTIVE BLADDER CAUSING

YOU TO LIVE AN UNDERACTIVE LIFE?

Terry Moakley


By Marcie Roth,Executive Director and CEO, NSCIA

As the parent of a high school juniorand a college senior, both with dis-abilities, and as the CEO of a na-

tional disability organization, I thinkabout barriers and disincentives to em-ployment a lot.

When I recently talked about 70 per-cent of people with SCI being unem-ployed 10 years post injury, I wascorrected by someone who pointed outthat in fact 30 percent of people with

SCI 10 yearspost injury AREworking…

While Ithink this is anabsurd exercisein semantics,the deeper ques-tion is, why aresome peopleable to figure

out how to “make work work” for themand how can this be replicated for others.

Recently, I learned of a man whobroke his neck in a bicycling accidentjust a little over a year ago. I was thrilledto learn that he has already gone back towork as a high school teacher and coach.Bret Neylon’s injury resulted in quadri-plegia and he uses a ventilator. The ex-tent of his paralysis would not indicatethat he’d be a good candidate to returnto work, but he has, nonetheless and sohave many others.

With some great community spirit,an employer and a vocational rehabilita-tion agency willing to invest in appropri-ate supports and technology, andespecially Neylon's willingness to figureout how to make it work, the synergy forsuccess seems to be in place. One of hisstudents, quoted in a recent article in hishome newspaper, the Indy Star said, “I’mjust so grateful that I have him for ateacher.... I'm so excited about this yearnow.”

Whether that was because of histeaching style or a myriad of other rea-sons why a teenager enjoys a teacher, themessage is clear. Going back to work isworking for Neylon.

Congress attempted to address some ofthe disincentives when they passed theTicket to Work and Work Incentives Im-provement Act back in 1999, but eventhough all 50 states offered “Tickets” by2004, outcomes have been lackluster, atbest.

For most people with SCI/D, the rea-son for this is that most still consider thedisincentives to work as just too un-

wieldy or downright risky. People are jus-tifiably concerned that they will lose eli-gibility for Medicaid, Medicare or otherbenefits that cover the extraordinaryhealth and independent living costs asso-ciated with paralysis as soon as their in-come is deemed too high, and yet theincome levels of all but the highest paidworkers couldn’t begin to cover thosecosts.

For many, the process of gettingSSDI or SSI in the first place may havebeen so arduous that they don’t want totake a chance on anything that may dis-rupt eligibility for these important re-sources. People are also hesitant to returnto work because of issues with trans-portation, personal assistance and often,just the basic fatigue factor associatedwith getting ready for, getting to and en-gaging in an eight hour work day. And,until now, the Ticket to Work Programwas too stringent for most people to con-sider trying.

Fortunately, there has been quite a bitof pressure applied to getting people backto work, and an equally big enoughawareness of the disincentives that somehealthy changes may be underway. Infact, the Social Security Administrationhas announced that they are seekingcomments about the Ticket to Work pro-gram until Oct. 12.

They are proposing revisions to thecurrent Ticket to Work program rules tosimplify and improve the definition of“using a ticket” and related requirementsfor measuring “timely progress towardself-supporting employment.” You maygive them your comments by using theFederal eRulemaking Portal www.regula-tions.gov or e-mail to [email protected].

For those who are ready to begin ex-ploring options for returning to work oreven for a first time effort to become apart of the workforce, there are programsthat can help you maximize what is inplace to achieve successful employment.Many people have gone to EmploymentNetworks for assistance. To learn moreabout the Ticket to Work program or tofind an Employment Network, go to:www.yourtickettowork. com

We all need to redouble our commit-ment to figuring out how to increase thatnumber from 30 percent to a numberthat includes anyone who wants to work.And we need to be sure that the disincen-tives and societal barriers are eliminated.Employment Networks have great poten-tial for building important bridges andNSCIA will be looking carefully at whatwe can do to facilitate opportunitiesthrough these important resources.

Making Work Workfrom the executive director

BUSINESS ADVISORY COMMITTEE ROSTER

Acorda Therapeutics, IncAOLAT&T

Bank of AmericaCendant Citigroup

Darden Restaurants, Inc.Federated Department Stores

HPMcDonald's Corporation

McGuire AssociatesMedtronic, Inc.

Microsoft Corporation

Mitsubishi Electric America Foundation

Motorola Inc.

Craig H. Neilsen Foundation

Pfizer

Princess Cruises

Royal Caribbean Cruise Line

Quickie / Sunrise Medical

US Micron

Wal-Mart Stores, Inc.

Vote for 2007 Spinal Cord Injury (SCI) Hall of Fame Candidates.

Voting Ends September 30.

For more information, visit www.spinalcord.org or email [email protected].

Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant

contributions to quality of life and advancements toward a better future for all individuals

with spinal cord injury.

5Ju ly /August 2007

REAL PEOPLEREAL CHALLENGESREAL SOLUTIONS

• Independent and Assisted Living Products & Services• Professional & Consumer Workshops & Seminars• Hundreds of Companies & Equipment Demonstrations • Non-Profit and Community Organizations• Incredibly Motivational People and Leaders of All Ages

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All events are wheelchair accessible. SCI Life�

Questex Media Group provides certain customer contact data (such as names, addresses, phone numbers and e-mail addresses) to third parties who wish to promote relevant products,services and other opportunities which may be of interest to you. If you do not want Questex Media Group to make your contact informationavailable to third parties for marketing purposes,simply call 800-385-3085 between the hours of 9 am and 5 pm (EST) and follow the instructions to remove your name from Questex lists. © 2007 Questex Media Group. All rights reserved.

www.abilitiesexpo.com

Bring this coupon to Abilities Expo for FREE admission and save the $5 on-site registration fee.Coupon must be filled out to be valid and may be photocopied for additional registrants.

San Antonio, TX New York Metro, NJJanuary 26-28, 2007 April 27-29, 2007

Long Beach, CA Minneapolis, MNJune 15-17, 2007 September 7-9, 2007

By Patrick Maher,Acting President, NSCIA

Welcome to another stellar issue ofSCILife, the flagship publication ofNSCIA. A common theme at

NSCIA seems to be change, fortunatelyfor the better most times. And, in fact, wehave experienced some positive and strate-gically supportive changes since our lastissue.

Before conveying some of our positivechanges, however, I must note one changewithin our board of directors with disap-pointment and respect. Harley Thomas, our

president of theboard, has steppeddown from his lead-ership role due tohealth reasons.During Harley’stenure as presidenthe has had an ex-traordinary impacton our operations,

been a steady and mature hand on the board,and represented NSCIA exceptionally well asthe face of the board. His military veteran sta-tus has been important in strengthening ourrelationship with veterans’ groups and thiskey constituency of SCI/D. We cannot beginto thank Harley adequately for his leadershipand passion, and for being instrumental inleading the mission of NSCIA.

As for some highlights of recent posi-tive change, we have recently launched ourmuch anticipated NSCIA E-Store that willfeature products relevant to the quality oflife of persons living with spinal cord in-jury or disease – clearly aligned with ourimmediate and strategic mission. Manythanks are owed to our director of opera-tions and chief operating officer, Eric Lar-son, as well as to other staff and boardmembers for their hard work to supportthis important launch. The E-Store willalso be a vehicle through which we canhelp support our chapter network by of-fering them revenue-generating opportu-nities associated with the sale of certain ofthese fine products. Please make a point tovisit often – and buy! All purchasesthrough the E-Store go to support a higherquality of life for persons living withSCI/D and those who help support thatquality of life.

Our senior staff, led by CEO MarcieRoth, along with the board of directors,has been in active discussions with leader-ship of other potential partners to establishclear, collegial working relationships withthe purpose of taking advantage of thestrongest qualities/service offerings of eachorganization in order to strengthen overallservices to a larger client and membershipbase. Additionally, our relationshipsshould create a stronger, more influentialvoice for change at the highest levels of in-fluence – beginning with our legislators inWashington, D.C. and filtering throughlegislators at the state and local levelswhere our members lead their lives.

Finally, we’ve had several changes toour board and continue to look to have

our board grow and strengthen our diver-sity in terms of race, background and ex-perience, passion, orientation to ourmission, influence, and other key factorsin order to maintain and enhance a robustvision for NSCIA. I thank all of our cur-rent board as well as staff for your tireless

efforts to push that mission out throughprospective members first, and further tothe general public so that our voice isheard and that one day soon all personsliving with SCI/D, and all disabilities, cantake full advantage of this nation’s oppor-tunities for full inclusion and impact.

from the president

Vote for 2007 Spinal Cord Injury (SCI) Hall of Fame Candidates.

Voting Ends September 30.

For more information, visit www.spinalcord.org or email [email protected].

Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant

contributions to quality of life and advancements toward a better future for all individuals

with spinal cord injury.


By Rebecca Hare

In the 1996 report Achieving Independ-ence, the National Council on Disability(NCD) recommended that schools offer

students a disability curriculum that covershistory and culture, the Americans withDisabilities Act (ADA), positive attitudes,appropriate terminology and more.

Eleven years later, the ADA generationof young leaders is taking this recommen-dation as its marching orders. Youth leaderswith disabilities across the country are let-ting America know that it’s their right tolearn their history! Projects such as the stateYouth Leadership Forums (YLF) takingplace in 23 states around the country, theNational Youth Leadership Network(NYLN) and the 15 youth resource infor-mation and training centers all work onhelping youth and emerging leaders withdisabilities access this critical information.

Several states made this a rallying cry toeducate all youth about disability history,culture, and community. Two summers ago,West Virginia held a Youth Caucus. Thedelegates started out as a group of youngpeople with different disabilities, back-grounds and experiences and ended as acommunity of new leaders, brought to-gether by shared mission of empowerment.During a simulation exercise, designed toteach them about how a bill becomes a law,

they proposed and lobbied forthe Justin and Yoshiko DartDisability History Week bill,which designated the thirdweek in October to be Disabil-ity History week, to educate allchildren in public schools

about the importance of the disability civilrights movement. West Virginia Speaker ofthe House Bob Kiss was so impressed withtheir preparation and presentation that heagreed to sponsor a real bill, to be writtenand lobbied by the delegates, in the next leg-islative session. It passed the House and theSenate in the spring and was signed into lawbefore the summer of 2006.

The North Carolina Youth LeadershipNetwork has developed a bill dedicating anentire month to promoting disability historyand awareness and has included the devel-opment of a consumer driven sex educationcurriculum for students with disabilities intheir state. This bill, and a disability historyand awareness bill in Connecticut, are ex-pected to pass this year.

Young people in Iowa, Washington,Illinois, New York, Pennsylvania, Ken-tucky and other states are jumping onboard to make this happen. If you’re inter-ested in learning how you can join orspearhead this effort in your state, pleasecontact Rebecca Hare at [email protected] or202-822-8405 x127.

Rebecca Hare is the project coordinator forthe National Consortium on Leadership andDisability/Youth and is a former youth leaderwith a disability working to help future lead-ers make the change that they want to hap-pen in the U.S.

Disability History Week Curricula

Spreading Across the Nation

Attorney Ronald R. Gilbert

Attorney for the Spinal Cord Injuredif you, a friend or loved one, has been injured by: (1) Aproduct or use of a product (e.g. helmet, vehicle even if it is aone vehicle accident and you are the driver, ladder, trampolinemore), (2) On someone else’s property (e.g. falls, gunshot,recreation or athletic events more), (3) During a medicalprocedure or as a result of a prescription drug — YOU MAY BEENTITLED TO ECONOMIC RECOVERY.

Put the nation’s top personal injury specialist to work foryou. Ron Gilbert has helped over 300 spinal cord injuredpersons in 35 states collect the compensation they deserve. Ifyou have suffered a spinal cord injury, he will try to help you.

Compensation from successful and responsible litigationcan open doors to a better life.

Some of Ron Gilbert’s many efforts to help the spinal cordcommunity include:

• Helped sponsor legislation benefitting spinal cord injuredpersons.

• Served as Secretary and member of the Board of Directorsof the National Spinal Cord Injury Foundation.

• Received a Certificate of Appreciation for Prevention workfrom Michigan PVA.

Time may be working against you. A rule of law called theStatute of Limitations puts a time limit in which you may file aninjury claim. This time can be as short as one year. If you havebeen seriously injured, time may be running out. Don’t wait.There is no cost to talk to Ron.

For help, call Ron Gilbert today for a free review of yourlegal options. He’ll provide legal help as well as assistance inplanning, and coping with the physical, emotional and otherchallenges you face.

1-800-342-0330Ronald R. Gilbert, P.C.

www.fscip.org / [email protected]

[email protected]

If you have suffered a spinal cord injury, call today to receive afree legal consultation and complimentary copy of SpinalNetwork and a handbook on legal options for victims of spinalcord injuries.

Cases HandledPersonally Nationwide

OPTIONSFOR VICTIMS OF

SPINAL CORD INJURIES• Financing The Future: Managing

Disability-Related Expenses

• Liability, Compensation And Your Rights

• Legal Options

• Improving Safety Through Legal Action

• Finding And Choosing An Attorney

• Getting Help: A Guide To Organizations

• For Details, Go To Ron’s Website —www.fscip.org For Legal Options AndProfessional Help.

Who’s Who in American Law1985 through present

Advocate for the Spinal Cord InjuredPut the nation's top personal injury specialist to work for you. Ron Gilbert has helpedover 200 spinal cord injured persons in 35 states collect the compensation they deserve.If you suffered a spinal cord injury, maybe he can help you.

Compensation from successful and responsible litigation can open doors to a bet-ter life. With the high cost of disability related expenses, you need to know all your op-tions. It takes an experienced, committed, caring specialist to make the system work foryou.

Among Ron Gilbert's many prevention and advocacy efforts, he has:

° Helped sponsor legislation benefiting spinal cord injured persons.

° Founded the Foundation for Aquatic Injury Prevention and the Foundation forSpinal Cord Injury Prevention, Care and Cure (www.fscip.org).

° Served as Secretary and a member of the Board of Directors of theNational Spinal Cord Injury Foundation.

° Received a certificate of appreciation for Prevention work from theMichigan PVA.

° Served as a member of the SCI/TBI Advisory Committee - Michi-gan and Vice Chairman 1988 - 1996.

Time may be working against you. The rule of law called the Statuteof Limitations puts a limit on the time in which you may file an injuryclaim. This time can be as short one-year. If you have been seriouslyinjured and haven't talked with a lawyer, time may be running out.Don't wait. It won't cost you a cent to talk with us. And it may be themost important telephone call you'll ever make.

To get started, call Ron Gilbert today for a free review of your legal options. He'll pro-vide legal help as well as assistance in planning, networking and coping with the phys-ical, emotional and legal challenges you face.

If you have suffered a spinal cord injury, call today to receive a free legal consultationand complementary membership in the National Spinal Cord Injury Association, includ-ing the publication Options, a complementary copy of Spinal Network and a hand-book on legal options for survivors of spinal cord injuries.

Cases Handled Personally Nationwide

1-800-342-0330Ronald R. Gilbert, PC

www.fscip.org / [email protected]

OPTIONS FOR SURVIVORS OPTIONS FOR SURVIVORS OF SPINAL CORD INJURIESOF SPINAL CORD INJURIES

° Financing The Future: Managing Disability Re-lated Expenses

° Prevention: Helping Others Avoid Accidents ° Liability, Compensation And Your Rights ° Legal Options ° Improving Safety Through Legal Action ° Finding and Choosing An Attorney ° Getting Help: A Guide To Organizations

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e-mail: [email protected] web site: www.spinalcord.org

The National Spinal Cord Injury Association (NSCIA) is anon-profit membership organization for people with spinalcord injuries, diseases and dysfunction, their families, their re-lated service providers, policy makers, organizations, hospitalsand others interested in the issues affecting the spinal cord in-jury community. Our mission is to enable people with spinalcord injuries, diseases and dysfunction to achieve their highestlevel of independence, health and personal fulfillment by pro-viding resources, services and peer support.

Become a Member Today.It’s Free!

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When I was in high school, I was dar-ing. I loved roller coasters andcouldn’t wait to skydive and bungee

jump and do all of the things that wild andcrazy people do. Somewhere along theline, I lost my courage. I never got a chanceto do any of those adventurous things. Sowhen I had the chance to fly a glider plane,I was hesitant at first. After some persua-sion, though, I was ready and excited!

Freedom's Wings was started in 1980by Irv and Mary DeAngelo Soble. Theirhome base is at Van Sant airport in Er-winna, Pa. On June 2 and 3, Freedom’sWings offered free glider plane flights forpeople with disabilities in Hillstown, Pa.When I arrived at the air park that Satur-day, I saw three glider planes lined up, eachattached to a Piper Pawnee tow plane.Overhead flew another glider. My heartbegan to beat just a little faster. It was hotand muggy. I signed in and was immedi-ately taken to my glider. Wow! That wasquick, I thought. I began to sweat. If itwas from the heat or my nerves, I wasn’tquite sure.

The Freedom’s Wings team helped metransfer into the plane by placing a softcushion on the rim for me to place my button so I could continue the transfer downinto the seat. Had I not been able to usemy upper body for the transfer, a Hoyer liftwas available. The glider was a two-seater.I was in the front. A certified pilot was inthe back.

As I was strapped in, someone ex-plained all of the gauges on the face of theplane to me, including an altimeter (readsheight above sea level), an airspeed indica-tor (reads speed of the aircraft), and a var-iometer (reads rising air in lift and goingup or sinking air in sink and descending).I have to admit, as I listened to the instruc-tion, my mind was wandering. All I couldthink was, I hope I don’t crash, I hope Idon’t crash...! I thought maybe they shouldlabel those dials for people like me whosenerves take over their brains when learningwhat could possibly be crucial information!

The top of the plane was secured andthe glider was attached to the tow plane.There was no turning back now! As thetow plane began to move, I quickly felt theglider come off the ground. The more wewent up, the more my stomach dropped!

Before I knew it, we were 2,500 feetabove sea level! I looked down at thehouses below, and thought about how re-freshing it would be to take a dip in thosepools!

Every so often I felt a bump. You canprobably guess by now that these bumpsmade me nervous, but the pilot behind meassured me that this was a good sign. Eachbump was called a “thermal.” After theglider was detached from the tow plane,these thermals were our source of stayingin the air.

I glided for about 15 minutes. I haveto be honest, although given plenty of op-

portunities, I probably only piloted theplane for three minutes. Luckily the pro-fessional pilot behind me had his own setof controls! I did, however video tape theentire experience from the air. I wasn’tgoing to let this go undocumented! It’s tooamazing – I can’t step up a curb, but I canfly a plane!

Although I was terrified, I know it isimportant to step out of your comfort zoneevery once in a while. Somehow it remindsyou that you’re alive.

I think after a traumatic accident whichresults in disability, there are two kinds ofpeople: Those that think, “Lighteningwon’t strike twice, I might as well seizeevery opportunity and stare danger in theface!” and those that think, “The world hasproven to me that I am not invincible. Ineed to be careful with my body and myprecious life.” Slowly but surely I havecrossed from the first type of person to thelatter. Still, I am happy to know that I haveenough courage, even if just once, to facemy fears. And it’s especially nice when thedaring adventure is actually a safe ride withqualified professionals who have a {knockon wood} perfect track record.

The Freedom’s Wings team did a greatjob of making me feel comfortable, safeand excited. As I spoke to each member ofthe team, I could see how much they lovegiving people the opportunity to get out oftheir chairs and soar. Please visit www.free-domswings.org or call 1-800-382-1197 toschedule a ride!

7Ju ly /August 2007

Gliding High with Freedom’s Wings Santina Muha prepares to fly a glider plane.

After a safe landing, Muha relaxes with RichardFucci, program director of Freedom’s Wings.

After “Teddy 25 – Celebration of Life,Hope and Possibilities,” SCILife StaffWriter Santina Muha interviewed

Teddy Pendergrass.

SM: What made you decide to hold thisgala?

TP: My 25th anniversary of being in-jured. I knew it was coming up when Ithought about it last year and I honestlyjust thought there could be no better wayto celebrate it then to say thank you tothose that have helped me reach those 25years. To coincide with that, some of myfriends actually wanted to thank me. I wasthe executive producer of the entire affairfrom my organization. I conceived theidea, conceptualized it, put the team to-gether, so the whole thing was my baby. Ididn’t just show up. I put it together. Ilived it for nine months, so everything wasbased on my decisions. I steered the ship.It was all great. And that’s how I’ve beenall my life. I don’t sit around and wait tobe told. I am proactive, I get it done.

SM: How did you choose who you wouldinvite to perform and who would beyour honorees?

TP: The process was actually pretty hard be-cause being in this business so long I knowa lot of people so I pretty much just kept itto the people that I know really well, that I

deal with regularly and pretty much aPhiladelphia based thing. So except forStephanie (Mills) and Melba (Moore),everybody else was from Philadelphia. SoBill Cosby and Kindred and Musiq, all thosepeople are Philadelphia people. And Patti,we’re all home people.

SM: Many people at the event said youhave inspired them. Who has inspiredyou?

TP: There are tons of people who have in-spired me. It started out with other peoplein show business, and you’re way tooyoung to know who these people are. Theywere other people who showed me thecharacter and professionalism and led meto believe that I could do that too. Butnow, I’ve followed through, made my ownway and I raised the bar. It’s always up tosomebody to raise the bar. You have organ-izations that are about cure, and that’s fine.I’m about, “What do I do now? What doI do in the meantime?” I could sit around,literally sit around, twiddling my thumbsand say, “OK, I’m waiting for a cure, I’mwaiting for a magic bullet.” Or you cansay, “You know, I want to pay some billsand I want to enjoy myself. I want to bean independent, productive individual andhave stuff.” That for me is more importantthan what may happen later. You have toeat every day, you have to pay bills everyday, you have to feel useful every day. If

not, that’s how people get depressed, whypeople live on SSI, why people don’t aspireto anything. Because they’re hopeless.They have no way of feeling they can everdo anything. It’s like being suddenly spinalcord injured is a death sentence. All youdo is lie around and wait to see whatcomes on TV next.

With organizations like NSCIA hope-fully we give people access to things thatwill give them opportunities to live a life,and these are the people that I search outto work with. The Teddy Pendergrass Al-liance means that I am working with otherpeople to make things happen, always tobenefit people with SCI. That’s all I cantalk about. I can’t go across the board withdisabilities because I can’t speak to all ofthose. I can’t help everybody; I can helpthe people that I can relate to.

SM: How do you stay fresh and new asan artist?

TP: I don’t. No, I don’t. I think that thethings I have been fortunate to have ac-complished constantly stand up. It doesn’tneed to be reinvented. There can’t be an-other Teddy Pendergrass, like there can’t beanother Elton John. There can’t be anotherElvis Presley. There can’t be another BarryWhite, Marvin Gaye. There can’t be an-other. Those are people who have leftmarks on humanity, on society. What theydo is unique unto them, so you don’tworry about staying fresh. When you’re atrue superstar you don’t need to do that.Just be who you are. There’s only one Ce-line Dion, there’s only one Dionne War-wick. You know, you can’t replace that. So,in 20 years if Celine Dion decides, “I’mdone, I’m tired of what I’m doing,” anddecides in 10 years to come back, therewill be nobody that will take her place. Ifshe decides to come back out in 10 yearsand do what she wants to do, her audience

will be there. I’ve stayed off the stage for19 years, went back on tour in 2001 andmy audience was there. So I don’t do any-thing to stay fresh. I just continue to workmethodically and try to make sure that myheart is in the right place, and I do theright thing. And that in and of itself keepsyou, hopefully, attached to your people.

SM: As a celebrity with SCI, do you feela sense of responsibility to bring aware-ness to it?

TP: More than awareness. I think there isa sense of urgency for people to have a cando spirit, attitude. You can have a produc-tive life. That’s why “Teddy 25 – Celebra-tion of Life, Hope and Possibilities.”Because I went from the top to the depthand rose back up, so there are numerousand endless possibilities and I want thatmessage to be conveyed and as an exampleof what can happen. So for me, it’s an op-portunity to utilize my celebrity and myability to make sure other people knowthey have opportunities available and thatthere are avenues and resources.

That is my reasoning for partneringwith NSCIA. I don’t partner lightly. I don’treally need partners. But when I see some-one who believes or an organization thatbelieves in what I believe in and we canwork together in synergy and commitmentfor our cause and purpose, then that’s whatmakes sense to me.

SM: Do you think you will do this againin another 25 years?

I’m going to do many other fundraisers,but there can only be one 25. That wasdone one time and that’s that. Now I’m offonto other things. My creativity comes upwith so many things, there’s no end tothat. I write songs, I decorate my house.As long as it’s creative I’ll try it.


Continued from page 1

honorees included Regis Philbin, MarkMays, Cathy Hughes, Whitney Houston,Kenny Gamble and Leon Huff, and Ashford& Simpson. The event was hosted by come-dienne Mo’Nique.

Many that night used the term “legend”when discussing Pendergrass. Patti LaBellespoke highly of him and the event. “It’s spe-cial because it’s Teddy Pendergrass. AndTeddy has shown everybody that if some-thing happens to you, life doesn’t stop. Itgoes on and on. It goes on beautifully.” La-Belle added, “Before the accident, he wasstanding up and women were throwing theirpanties at him and he was catching them.Now he’s not catching them, but they’re stillthrowing them!”

Musiq Soulchild, a young artist and a fanof Pendergrass said, “I’m not only here insupport of a great artist, a great musician anda great entertainer, but I’m also here in honorof a great person who persevered beyond andtranscends beyond his obstacles.”

Singer Stephanie Mills, who has known

Pendergrass since before his spinal cord in-jury said she found herself in awe of Pender-grass as she watched him struggle. “It mademe want to be stronger, do more, because Ididn’t have a disability.”

Actress and singer Melba Moore, bestknown for playing Dorothy in “The Wiz,”also watched Pendergrass’ transition from be-fore his injury to the present. “You hear peo-ple say all the time that tragedy can makeyou stronger. It’s one thing to say, but it’s re-ally quite incredible to see.”

Host and comedienne Mo’Nique, whobrought humor to the evening, remembersthe entertainment industry’s reactions asPendergrass’ life took each turn. “Before thataccident, watching Teddy was like, ‘Oh myGod!’ And after the accident, everybody waslike, ‘Oh my God.’ And when we saw thatbrother come back, everybody said ‘Oh. My.God!’”

Working toward similar goals in termsof the quality of life of people with spinalcord injuries, NSCIA has been workingclosely with TPA. NSCIA CEO MarcieRoth, who was honored to be a guest at thestar-studded event, knows that Teddy’s com-mitment far exceeds his on-stage presence.

“His commitmentto building TPA isstrong and we areexcited to beworking as part-ners with TPA inour shared com-mitment to maxi-m i z i n gopportunities forall people withSCI.”

Basketball starand close friendof Pendergrass,Julius “Dr. J” Erv-ing was co-chairof the event. Hesaid, “I think it’s always important for peo-ple to find their niche in life. Teddy’s niche,since he understands his fate and has de-cided to be a productive person, is a neces-sity, because I think it inspires people whohave spinal cord injuries to know that theycan have a quality of life. Sometimes thingsare taken away from your life and it just en-hances other aspects and characteristics ofyour being.”

In celebrating the people who havehelped him along the way, Pendergrass him-self was celebrated. Attendees and honoreeswere there because they love and admire aman who has gone through a physicalchange but remained the man he has alwaysbeen. His newest song even celebrates this.

As his journey continues, his friends andfans clearly expect Pendergrass to succeed inways that only a true legend can.

Teddy Pendergrass... Actress and singer Melba Moore with NSCIA’s Marcie Roth and Santina Muha.

“I Went from the Top to the Depthand Rose Back up.”An interview with Teddy Pendergrass

9Ju ly /August 2007

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make a difference for others."-- Soul music legend and SCI Hall of Fame member,

Teddy Pendergrass

The Teddy Pendergrass Alliance andNSCIA are developing an interactive DVDto carry a message of hope and tangiblesupport for people with new spinal cord

injuries or disease.

If you’d like to share your story, orknow someone else who might, visit

www.spinalcord.org/mystory


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SAVE THE DATE!Join us in recognizing excellence as we celebrate and honor those whohave made significant contributions to quality of life and advancements toward a better future for all individuals with SCI at the third annual

Spinal Cord Injury (SCI) Hall of Fame GalaNovember 6, 2007

The Kennedy Center for the Performing ArtsWashington, DC

For information, visit www.spinalcord.org

By Len Zandrow,NSCIA General Counsel

Unfortunately, memories of summer va-cations and air travel are not always en-tirely pleasant for persons with

disabilities. Even with the increase in wheel-chair travelers taking to the skies, accommo-dations at airports and on planes are toooften inconsistent and unsatisfactory. This

article brieflyoutlines someof the keyrights of airtravelers withSCI and sum-marizes thesteps for filinga legal claim, ifnecessary.

The cor-nerstone oflegal rights for

air travelers with disabilities is the Air Car-rier Access Act (ACAA). This federal statutewas enacted by Congress in 1986, and is setforth in detail at Title 49, Section 41705.The law prohibits discrimination and re-quires airlines to accommodate the needs ofpassengers with disabilities.

Congress has given the Department ofTransportation (DOT) specific authority toenact regulations implementing the ACAA.

These regulations are set forth in Title 14,Part 382 of the Code of Federal Regulations.They have the full force and effect of law.

Discriminatory Practices Are Prohibited

The DOT regulations prohibit airlinesfrom refusing to transport people on thebasis of their disability. Airlines may onlyexclude a person from flying if doing so isnecessary to prevent serious danger to theflight. If an airline makes such a decision, itmust provide the traveler involved with awritten decision explaining its rationale.

Generally, airlines may not require priornotice that a person with a disability is trav-eling. Airlines may, however, require up to48 hours of advance notice for certain ac-commodations that require special prepara-tion time, like a respirator hook-up.Airlines are not allowed to limit the numberof disabled persons on a particular flight. Inaddition, they may not require a disabledpassenger to fly with an attendant, except incertain limited instances. If the airline andthe passenger disagree about the need for apersonal attendant, the airline may supplyits own attendant, but must pay his or herfare.

Airlines must also accommodate pas-sengers using service animals. Service ani-mals need not travel with checked baggage,unless no seats are available on the aircraft.For individuals traveling with service ani-

mals, the airline must provide a bulkheadseat if requested.

Facilities Must Be Accessible

Airports and aircraft must both be ac-cessible. Terminals are places of public ac-commodation and must conform in allrespects to the standards of the Americanswith Disabilities Act. Planes built after 1990with 30 or more seats must have removablearmrests on at least half of the aisle seats.The lavatories on newer wide-body planesmust be fully accessible. Newer planes with100 or more seats must have priority spacefor storing a passenger’s folding wheelchairin the cabin. Planes with more than 60 seatsmust also be equipped with an operable on-board wheelchair.

If the aisles on the aircraft are too nar-row to accommodate an individual’s wheel-chair, the passenger may need to transfer toa smaller aisle chair. If a passenger using anaisle chair cannot readily transfer over afixed aisle armrest, the airline must providea seat in a row with a movable aisle armrest.

Airlines are also required under the DOTregulations to provide assistance with board-ing, deplaning and making connections.Such assistance includes the use of servicespersonnel, ground wheelchairs, on-board andaisle wheelchairs, ramps and mechanical lifts.In no case shall airline personnel be requiredto hand-carry a passenger in order to provideboarding assistance.

Wheelchairs and other assistive deviceshave priority for in-cabin storage space overother passengers’ items. Airlines may not

charge for providing accommodations re-quired by the regulations.

How to Assert Your Legal Rights

The ACAA provides a comprehensive,three-tiered enforcement scheme. The firsttier is enforced by the airlines themselves,the second tier is administered by the DOTand the third tier involves review by the fed-eral courts.

Airlines must designate “complaints reso-lutions officials” to respond to complaintsfrom passengers. These officials must be read-ily available at each airport served by the air-line, either in person or via telephone. Theseofficials must be familiar with the DOT reg-ulations and must have the authority to re-solve any ACAA-related complaints.

If the passenger disagrees with the airlineofficial’s decision, he or she may file a formalcomplaint with the Secretary of Transporta-tion under 49 U.S.C. sec. 41705(c)(1). Ifthe Secretary decides that there appear to bereasonable grounds for the complaint, theDOT may impose up to a $25,000 fine foreach violation, 49 U.S.C. sec. 46301, or itmay separately initiate a civil action in thefederal district courts to enforce the ACAA.The ACAA also gives individuals the rightto appeal any adverse decision by the Secre-tary to a federal appellate court. 49 U.S.C.sec 46110(a).

This article only briefly summarizes an airtraveler’s rights and remedies under theACAA. For more detailed information,you may wish to consult this DOT website: www.dotcr.ost.dot.gov.

Navigating Claims against Airlines


Continued from page 1

While in Doha, Roth also had an op-portunity to visit Rumilah Hospital, whichis part of the Hamad Medical Corporation.She visited the physical medicine and reha-bilitation department. “They were verywelcoming and I had a great opportunityto learn more about what’s happening forpeople with SCI and other traumatic in-juries and how NSCIA might work withleaders in the Middle East on shared initia-tives.”

In Qatar, the incidence of SCI is ex-tremely high, with motor vehicle accidentsand industrial accidents due to the massiveconstruction as two major causes. Rothsaid, “The skyline in Doha is filled withcranes. I heard some amazing statistic thatthere are more cranes in Doha than in anyother place in the world right now. I don’tknow if that’s a fact but it wouldn’t surpriseme. Everywhere you look there are brandnew glassy, shiny buildings, because Dohais a very rapidly growing city in a part ofthe world that is heavily investing in theirfuture.”

Also according to Roth, “Where othercountries in that region are investing intourism, Qatar is heavily investing theirconsiderable resources in education, health-care, sports and culture. . . During my hos-pital visit, we talked about what a greatopportunity it is for Qataris to lead the wayin accessibility and opportunities for em-ployment and community living.”

But to what extent is this growth explo-sion designed to include people with dis-abilities? Roth said, “Just the same as anyplace else, there’s often a disconnect be-tween building the infrastructure and max-imizing opportunities for people withdisabilities so the commitment is still frag-ile at this point. One of the reasons we’reso excited about the promise within theU.N. Convention is that it does addressmany of these kinds of important accessi-bility issues. Countries that don’t have laws

governing the rights of people with disabil-ities don’t necessarily infuse those very im-portant decision making points intobuilding permits and program design.”

However, according to Roth, all theconstruction injuries have opened up cre-ative approaches to rehabilitation for thoseinjured on the job. “Many of the peoplewho have been injured are not citizens ofQatar. However, Rumailah Hospitaldoesn’t discharge people with SCI and trau-matic brain injuries until employment re-lated settlements are finalized. So ifsomeone from Indonesia, for example,who’s been in the country as a constructionworker, becomes traumatically injured andcan no longer work in construction, thehospital staff will help the individual tocontinue to receive appropriate treatmentuntil the final resolution of a settlementwith their employer. And then the staff willassist that individual to travel back to theirhome country so that they have the re-sources that they need in order to continuetheir recovery and establish their future. Sohospital discharge is not based on a setnumber of days. Instead, hospital dischargeis based on having in place what’s necessaryfor the individual to move to a less restric-tive environment.”

Both Roth and Smith felt embarrassedthat the U.S. has not signed the U.N. Con-vention. “I felt very comfortable and wel-comed by the people of Doha andespecially people at the Shafallah Center,”said Smith. “I did feel a little sensitivity tohow people responded to my being anAmerican. I think it may have been becauseI felt awkward about being from a countrythat did not sign the U.N. Convention.Nobody said anything about it in a nega-tive way, but the question was brought upa few times and that made me feel a littleawkward.”

This event, however, did not focus onthose differences. Roth noted, “For the sec-ond year in a row we were looking at oursimilarities, and I think everyone involvedcame away with a very strong sense that thisworld is a much smaller place because of

the similarities of people with disabilitiesand their needs, as well as our need to worktogether and connect on the very commonground that people with disabilities findthemselves on.”

This Forum once again proved to be ofgreat importance to the disability commu-nity at large, and to NSCIA. Expandingnetworks globally is vital to learning fromand providing support to partner organiza-tions around the world. Roth believesbuilding those types of relationships is in-valuable. It was also a great opportunity forpeople with SCI/D to be woven into thelarger international disability rights discus-sions that are going on in association withthe U.N. Convention.

Roth said. “I truly believe that a sharedcommitment to addressing the needs of the650 million people with disabilities aroundthe world, could be that unifying factorthat brings us together on other, more con-tentious issues.”

As the United States continues to makeadvances in technology and so many otherareas, the global disability community con-tinues to make their voices heard so that ac-cessibility will be incorporated into theseongoing changes. It is comforting to knowother countries are doing the same. As ad-vocates push for the United States to jointhe other 100 countries who have signedthe U.N. Convention, it will be interestingto watch the growth among those countrieswho are assuming the leadership on whichthe U.S. has historically prided itself.

International Forum ...

NSCIA CEO Marcie Roth (left) and Lady MadameJeanette Kagame, first lady of of Rwanda.

VOLUNTEER OPPORTUNITIES AT NSCIA

Are you looking for a way to make a difference?Volunteering with the National Spinal Cord In-jury Association (NSCIA) offers the opportunityto do just that – and in a way that fits your lev-els of experience and availability. Since we havea national Chapter network, and so much of ourwork is done via phone and email, we can workwith any motivated volunteer no matter whatthey live.

Volunteer support is vital to our organization'sability to accomplish as much as we do with lim-ited staff and budget. You can make a differenceby…

…building resources. The Develop-ment Committee helps NSCIA identify and con-

nect with sources of funding and foster thedevelopment of the Association’s financial well

being.

…raising voices. The CommunicationsCommittee works with the VP of Communica-tions and NSCIA staff to facilitate communica-tions both within and outside the Association.

…growing our membership. TheMembership Committee works with the VP of

Membership to promote the growth and devel-opment of the Association’s membership andhelps to build and communicate the value of

membership in NSCIA.

…supporting special projects. OurResource Center also uses volunteers on a

project basis, depending on current activity,ranging from research to phone/email contact

to planning or staffing events.

…working with local Chapters.Most of our national network of Chapters alsouse volunteers and we would be happy to con-

nect you with a Chapter in your area.

Committees typically meet monthly via tele-conference, and time commitment varies butcan be average little as 2 - 5 hours permonth depending on your committee, or ashigh as you want, limited only by your pas-sion for progress.

If you would like more information or toapply to serve as an NSCIA volunteer, pleasecontact Eric Larson at 847-997-2109 or [email protected].

Got a Story?Share it!

"I know what it's like to face a life changing eventlike a spinal cord injury, and how much the rightsupport can mean to someone in those first few

days and weeks after the injury. I've been trulyblessed in my life and this is a chance for me to

make a difference for others."-- Soul music legend and SCI Hall of Fame member,

Teddy Pendergrass

The Teddy Pendergrass Alliance andNSCIA are developing an interactive DVDto carry a message of hope and tangiblesupport for people with new spinal cord

injuries or disease.

If you’d like to share your story, orknow someone else who might, visit

www.spinalcord.org/mystory


Accessible Golf Anyone? By John Fioriti

The game of golf offers endless benefits toall who play. Golfers receive health ben-efits from the physical activity, experi-

ence greater quality of life from the socialnature of the game and acquire feelings ofself-determination and confidence. AuthorsDr. Peter Ryan and Michael Chorost of SRIInternational assert that these “social andcultural attributes make golf an excellentbasis for programs which aim to teach skillsthat can be used both in the sport and inlife.” In addition, golf is one of the fewsports where participation spans across gen-erations, making it truly a lifetime activity.

Jerry Donovan, a member of the Bostonchapter of NSCIA with a SCI, appeared onFox news in a new personal mobility devicethat allows him the opportunity to play golffrom a standing position. Standing chairshave been around for a long time; howeverthis is the first time one was designed to giveusers full access to the outdoors and the abil-ity to enjoy an afternoon on the golf coursewith ease. Previously, golfers have used ac-cessible golf carts designed with swivel seatsthat allow the rider to set up for a shot withshortened golf clubs or they could use stan-dard clubs and address the ball from a littlefurther away in order to give it a ride downthe fairway. The Para Mobile chair is the firstof its kind to allow the player to positionhimself over the ball using standard clubs andget a full swing in from a standing positionwith a little torque from the hips, which is anadded benefit when driving the ball, increas-ing the amount of impact that can be deliv-ered with the shot. This gives the user morepower and confidence and the closest prox-imity to playing the game from an uprightposition. Donovan says his breathing is betterand his back pain has gone away. Even moreadvantageous, Donovan says, “I can reach theball on the ground all by myself, tee the ballup, access the ball anywhere on the courseand play independently without having toask for help.” His friends even made a deviceso he can pop the ball out of the hole. Dono-van's goal this year had been to par a hole.He surpassed that goal with a recent Birdie.

Dennis Walters is one of only eight peo-ple to be named an honorary lifetime mem-ber of the Professional Golfers’ Association(PGA). He also has inspired thousands ofpeople to put aside their trepidations andtake up the sport. He has dedicated his lifeto encouraging and teaching people thegame of golf. Not only can he put a golf ballanywhere he pleases with amazing precision,when he performs, his array of trick shotswill astound everyone in his audience as hepops a ball through hoops, through fire andwith 30 different types of golf clubs includ-ing a garden hose. Walters’ message goes be-yond golf, as he delivers an awe inspiringgolf show with shots no other human hasever dared to make, and underneath it all is

a strong positive message about setting goalsand daring to make your dreams a reality.His real hope is that at least one person inthe crowd will forget their personal limita-tions and give golf a try.

Walters was well on his way to joining thePGA tour before he was injured when a golfcart overturned on him. He said on the firstday he returned to the game he loved, heknew that he could never play the way he didbefore. This is something he struggled withas most people do when they return to an ac-tivity they did before their injury. “It was oneof my biggest challenges,” says Walters. “Iknew I needed the right attitude. What I didwas focus on, ‘How am I playing today?How can I improve?’ It’s not the same, but itsworth trying.” Walters improved his game alittle each day. He has been an ambassadorfor the PGA, recently entertaining 800 kidsin Norton, Mass. for the PGA’s youth clinics.He’s working with the United States Golf As-sociation on bringing golf to inner city youth,people with disabilities, young girls, and kidsin rural America. To find out when Waltersis visiting your area, visit www.denniswal-ters.com

Walters is thought by some to be the firstperson to adapt his own golf cart with aswivel seat 32 years ago. But today there areso many carts that John Nicholas’, not to beconfused with legendary golfer Jack Nicklaus,reviews many accessible golf carts on his web-site www.members.aol.com/accessiblegolf/GolfCars.html, where he shares his firsthandexperience using all of the different types ofaccessible golf carts on the market.

The Solo Rider is one of the best knownof these accessible golf carts, and received

high marks from Nicholas for its design anddurability. It has a hydraulic stand up seatthat gives the golfer great positioning for ashot. Another cart he recommends is theModel Tee. Besides the cute name, this cart isreminiscent of Ford’s Model T. The advantageof this model is that the foot rest is attachedto the swivel seat, so the operator can turn to-

wards the ball without having to readjust hislegs each time. Without this, in an 18-holegame, if a person playing with paralysis hadto swing five times per hole and lift and moveeach leg three times per hit, they would haveto pick up and move each leg 540 times.Needless to say, the Model Tee is a tremen-dous time and energy saver.

in motionDennis Walters plays in a customized Yamaha golfcart, equipped with a passenger side swivel seat.

MissingCopies

of SCILife?

Become a member of our on-line community

and get instant accessto all previous SCILife issues.

visit www.spinalcord.org

ACCESSIBLE GOLFING RESOURCES

National Alliance for Accessible Golf www.accessgolf.org

e-mail: [email protected] voice: (703) 234-4136

According to the National Center for Accessibility:People with disabilities WANT to play golf. In fact, 10percent of people with disabilities play golf. Twenty-two percent of those that are disabled are not playinggolf, but did prior to their disability. Thirty-five percentwho currently are not playing would like to play.

Advocacy Organization for Accessible Golf www.mobilitygolf.com/aboutus/

Accessible Golf Course listingswww.golfxpress.com/accessible.htmwww.mobilitygolf.com/

Accessible Golf Cart info www.members.aol.com/accessiblegolf/GolfCars.htmlwww.mobilitygolf.com/equipment/

Para Mobilewww.uwillstandup.com(603) 860-7891

First SwingThe First Swing enables individuals to enjoy theunique, friendly atmosphere found on the golf course.www.nagagolf.org/clinic1.php?f=2007fs

Project Gain Project Gain is a national research and development

project funded by the PGA Foundation, United StatesGolf Association Foundation and the PGA Tour. Theproject is designed to be a comprehensive community-based program, using the game of golf as the primaryvehicle for maximizing opportunities that ensure theinclusion of people with disabilities within the fabricof local communities. www.accessgolf.org/projectgain/

Project Gain has official sites in:

Howard County, Md. Department of Recreation and Parks7120 Oakland Mills, RoadColumbia, MD. 21046-1677

Sacramento, Calif.Disabled Sports USA Far West6060 Sunrise Vista Drive, Suite 2540Citrus Heights, CA 95610Phone: (916) 722-6447

Salt Lake City, UtahAnnex C, RM 1085A 250 S. 1850 E. RM 2001901 E. South Campus DriveSalt Lake City, UT 84112-0920 Phone: (801) 581-8754

Toledo, OhioThe Ability Center of Greater Toledo5605 Monroe St.Sylvania, OH 43560Phone: (419) 885-5733


By Eric LarsonNSCIA Director of Operations

Debbie Myers took on the role of vicepresident for chapters of NSCIA andhas since become the “voice” of NSCIA

to Chapters, Support Groups and other or-ganizations considering affiliation withNSCIA.

Myers was injured in 2001 in a fall thatresulted in paraplegia due to a T12 incom-plete injury. Her family reached out earlyto NSCIA for education and informationabout spinal cord injuries, but Myers’ in-volvement came later.

“I don’t think I really noticed whatNSCIA was all about or took advantage ofthe resources available until later in my recov-ery,” says Myers. “I was focused on rehab andgetting home. But, once home, the NSCIAresource center became an invaluable tool asI tried to figure out my next steps.”

“I have a very proactive nature and I hada lot of questions about SCI and what oppor-tunities or options were available to me.Some of the information I was finding wasnational, but still it was extremely helpful in

finding local resources as well. It was still chal-lenging tracking down specific resources oropportunities here in North Carolina and Iwas meeting others in rehab and supportgroups with similar frustrations and a shareddesire to find a better way to organize orshare.”

Myers solution was to become more in-volved with WakeMed Rehab and the SCIprogram there, where she worked with othersto form the North Carolina Spinal Cord In-jury Association (NCSCIA), formally ap-proved as chapter of NSCIA in 2003. Myersis chairman of NCSCIA which has 80 mem-bers and reaches out to an additional 360 in-dividuals in North Carolina. She was MsWheelchair North Carolina in 2005, testi-mony to both her growing involvement inthe SCI community and her effectiveness inthose roles.

Myers has served on NSCIA’s Member-ship Committee and the 2006 SCI Hall ofFame Selection Committee. She played asupport role for the previous VP of Chap-ters, Shawn Floyd, before being elected byher peers as vice president of chapters.

Myers believes NSCIA provides greatvalue to its constituents, and believes astrong relationship between the national of-fice and chapters can be an important partof this value.

“The more I’ve been involved withNSCIA, the more impressed I’ve becomewith the level of commitment and compas-sion that NSCIA leaders hold for the SCI/Dcommunity, as well as their commitment tostrengthen the relationships and communi-cation between the national office andboard, and chapters.”

Before her accident, Myers knew little

about SCI, the rehab world, ADA issues orthe extreme challenges of working with in-surance companies. At the time of her acci-dent she was an executive with Sprint, withresponsibility for eight call centers and 800employees nationwide. She has a degree infinance and strong background in customerservice.

“I had a strong team and have alwaysbeen proud of their accomplishments,” saysMyers.

“I’m thankful that I can continue to de-velop my skills and utilize my professionalbackground and network in developing ourstate chapter, NCSCIA, and with the workI’m involved with at the national level. Wehave some really strong chapters and proac-tive individuals leading those groups. Thestate teams have great ideas and many hadthe opportunity to express their ideas andconcerns at the 2006 Summit. One of ourchallenges is the management or implemen-tation of these ideas. I would like to con-tinue to develop effective communicationbetween the chapters and national and Iknow chapters feel strongly about this also.I’d also like to strengthen the network amongthe chapters themselves. I’m familiar withmany of the activities among the individualchapters but the flow of information betweenthe chapters could be stronger. We have thetools like www.spinalcord.org, SCILife andNSCIA eNews, and we’re working to im-prove the communication among their chap-ter peers. Plans include regular chapterconference calls and a Chapter LeadershipDevelopment Workshop in November.

Additionally, we hope to initiate regionalface-to-face meetings with the chapters.Consistent sharing of information andworking with the strengths of the individualchapters can only improve our network atall levels.”

In addition to her substantial work inthe SCI/D community, Myers makes timefor much more.

“After my accident, I struggled to findmyself again. I was very used to activity andtaking care of others. I worked through thistime by looking at this phase of my life as aproject. What action items would I need toreach my goals? By asking these questions,researching my options and working towardmy goals, I’ve been able to celebrate somegreat milestones since my accident.”

“I have three bright lights in my life, myniece and two nephews. Of course I’m prej-udiced, but they’re the greatest kids and def-initely motivation for me. I want to be apositive role model for them. I hope I canteach them to work through adversity, focus

on milestones and celebrate successes.”Myers is an avid gardener and raises a

range of flowers and vegetables. Dogs arealso a big part of her life. She describes herChesapeake Retriever, Ally, as “a great com-panion, a bit spoiled and extremely playful.”It has also been rumored that neighborhooddogs also hang out at her house as wordabout the “treat lady” spreads.

Myers grew up in Illinois and graduatedfrom the University of Illinois in 1984 witha Bachelor’s in Finance. She moved toNorth Carolina in late 1993 due to her jobwith Sprint. Over the next several years, herbrother, sister and dad relocated to NC.

“I still have a lot of family back in Illi-nois and try to go home several times ayear,” she says.

“Debbie is one of those people that getsthings done without expecting a lot in re-turn,” says Debbie Johnson, who first metMyers when Johnson was her physical ther-apist in rehab. “If you didn't spend a lot oftime with her, you would never know howmuch behind the scenes work she does. Herpersonality is one that is comfortable doingthe under-the-radar, thankless work in orderto get good results. She expects no accoladesor glory in return and is merely happy to seethe fruits of her labor. She is one of thoserare and priceless people who does what shedoes, not for recognition or to earn a spotin heaven, but because it is the right thing todo and she enjoys providing opportunitiesfor growth and access to other people withSCI/D.”

Debbie Myers, VP ofChapters, NSCIA

board profile

The North Carolina Spinal Cord InjuryAssociation (NCSCIA) joined the ranks ofNSCIA Chapters in November 2003. Thegroup was created by current NSCIA VicePresident of Chapters Deb Myers and oth-ers in the SCI program at WakeMed Reha-bilitation Hospital.

Debbie Myers is chairman of NCSCIAwhich has 80 members and reaches out toan additional 360 individuals in the state.

“Our goals and programs are centeredon support, communication, informationand advocacy,” says Myers.

NCSCIA is actively involved in its fourthyear and is currently the only NSCIA chapterin North Carolina. Highlights of the pastyear include a third annual conference andseveral adaptive sport clinics, including handcycling, rock climbing and wheelchair rugby(quad rugby). Based on the success of theclinic and continued interest in quad rugby,NCSCIA developed a new wheelchair rugbyteam in eastern NC, the Raleigh Sidewinders.The Raleigh Sidewinders are official mem-bers of the US Quad Rugby Association andcompeted in several tournaments this pastseason. The team hosted their first tourna-ment in March 2007.

In addition to annual conferences and

adaptive sports clinics, NCSCIA has hostedseveral guest speakers, including SamMaddox, Knowledge Manager of theChristopher and Dana Reeve Paralysis Cen-ter, and Gary Karp, “Life on Wheels” au-thor and motivational speaker. Maddoxprovided a current update on research ac-tivities and Karp shared his personal andprofessional journey of adjustment, break-ing through the negative social assump-tions about disability

NCSCIA continues to develop their web-site and support programs. Additional socialactivities include regular movie and pizzanights, several monthly support groups, hol-iday dinners and various workshops.

“We are encouraged by our steadygrowth in membership across the state andincrease in vendor support at our events,”says Myers. “We are currently in the plan-ning stages for the debut of a majorfundraising event this fall that we plan tohold annually. We’re also in the initialphase of a new working relationship withthe Governor’s Advocacy Council for Peo-ple with Disabilities, which we are very ex-cited about. We are in a good place. Wehave developed a solid base and continueto expand our network.“

North Carolina Spinal Cord Injury Association

Debbie Myers as Ms. Wheelchair North Carolina.

Myers with niece and nephews.


By Bill FertigNSCIA Resource Center Manager

After I was spinal cord injured in 1999and began using a manual wheelchair,my house needed accessibility remodel-

ing before I could return home from rehab.Almost no traditional existing home orapartment is truly wheelchair accessible andmine was no exception. For instance, therewas a first floor bedroom but no bathroom.My resourceful wife, Noreen, used ParalyzedVeterans of America literature as a resourceto design a new, fully accessible bathroomand family and friends did the work beforeI returned home. Eventually it became clearthat this home would not meet our longterm needs because areas such as the laundryroom and garage remained inaccessible. So,we built a new home.

You may choose to build your own acces-sible home to meet your long-term needs andlifestyle. Keep in mind that your needs maychange over time. Allowing for an attendantliving area or other features you do not nec-essarily need now may be wise. Building ahome can be one of the most stressful expe-riences in life, but if you are able to keep fo-cused on the eventual goal (and keep your

sanity) it can be one of the most rewarding aswell. Keeping in mind that every situation isunique to some extent, and that our experi-ence may differ from yours, this article sum-marizes some of the key concepts we kept inmind during the design phase.

SITE SELECTIONLot size, price and personal preference

were our initial guides. How our home de-sign fit on the site was important too. Weconsidered the floor plan during site selec-tion. After identifying the site, you maywish to consult with the building inspectorfor your locale and the respective utilitycompanies to confirm access to water,sewage, electric, natural gas, phone andcable connections. Even though neededservices are available, will their location orthe utility companies’ regulations restrictyour choices? Several of these issues resultedin changes during our building process.

FLOOR PLANWe chose not to use an architect to design thehome to help control expenses. We inter-viewed multiple builders and once we hadour preliminary floor plan, we chose thebuilder who exhibited the most interest inbuilding what WE wanted, not what THEYpreferred. I visited a nearly completed homeconstructed by our builder to verify the qual-ity of his work before we signed the contract.

ENTRYYou need not have a ramp at entry points.Our site is gently sloped and the finish grad-ing allows for a no-step entry to front, rear,basement and garage. This serves everyone’sneeds and is more aesthetically pleasing to

some. It is very functional for me as a wheel-chair user yet blends in with the overalllandscaping.

GARAGEIf you plan either an attached or an integralgarage, check with your local building in-spection department regarding step-downrequirements. Normally, a garage is built ata minimum of four inches lower than themain floor to prevent gasses from enteringthe home. This requires a ramp inside thegarage resulting in additional effort andspace wasted. You may be required to applyfor a variance to your local codes but youwon’t know until you ask.

DOORSWe chose 36-inch doors throughout thehouse, which is optimal. A minimum of 32-inch clearance may be acceptable (or clearopening greater than the width of yourchair). A simple, composite door of 36inches is comparable in price to smallerdoors. Move in was a breeze with the largedoor openings.

ACCESS WAYSYour new home plan should allow an opti-mum of 48 inches (minimum of 40 inches)for hallway and other access paths. In ourranch style home, our “great room” containsthe kitchen, living and dining rooms sepa-rated by furnishings. This offers unlimitedaccess and furniture configurations in theopen areas.

KITCHENOpinions and needs vary in the kitchen.Our kitchen has plentiful maneuvering

space, including a minimum 52-inch turn-ing radius. Appliances have front controlsthat are easy for me to reach. An under sinkcabinet with a front set back allows me toget partially underneath the sink. A second,lower sink has a shallower sink bowl anddeeper cabinet setback for me (Now I haveto do more cooking though!). We also addedto the regular counter space a 30-inch highkitchen table supported by a 6-inch widewall centered underneath and anchored atone end for stability. This doubles as amulti-purpose work center that I can getunder on three sides.

BATHROOMSThis is where attention to detail proved in-valuable. Obviously, the more room that isavailable the better but wasted space is wastedmoney. I use a combination shower/com-mode wheelchair to avoid unnecessary trans-fers and the bath design needed to allow forthat. Our bathroom has a minimum 52-inchcenter turning circle, toilet placement withinan otherwise unobstructed 36-inch spacenext to the vanity, a ceramic tiled shower stallwith centered three-quarter inch lower floordrain, a variable height shower head mount-ing on 6-foot hose and a wall mirror extend-ing upward from vanity.

For purposes of this article, I consultedwith Rosemarie Rossetti, PhD. Dr. Rossettiis also a wheelchair user and is currently in-volved in building her own fully accessiblehome. Visit her Universal Design LivingLaboratory: www.udll.com.

For more on home modifications and Uni-versal Design visit www.spinalcord.org/re-sources/ and choose: Home Modifications

Accessible Home Buildingafter SCI

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NSCIA CHAPTER & SUPPORT GROUP NETWORKARIZONACHAPTERArizona United SCIA901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006Phone: (602) 239-5929 Ext. 444Fax: (602) 239-6268Contact: Paul MortensonWebsite: www.azspinal.orgE-mail: [email protected]

SUPPORT GROUPSEast Valley Support Group (COMPASS)Phone: (602) 241-1006Contact: Pauline Staples E-mail: [email protected]

Flagstaff Support GroupPhone: (928) 527-8567Contact: Al White

Grupo de apoyo en EspañolGentiva Rehab Without Walls, 7227 N16th St #107, Phoenix, Arizona Phone: (602) 943-1012Contact: Diane

Prescott Support GroupPhone: (623) 209-0311Contact: Gary Hershey

SCI Women Support GroupBanner Good Samaritan Hospital, 1111 EMcDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307Contact: Jill Greenlee, CTRS

CALIFORNIACHAPTERWYNGS, NSCIA7900 Nelson Rd., Panorama City, California, 91402Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano Website: www.wyngs.orgE-mail: [email protected]

SUPPORT GROUPSLeon S. Peter’s Rehabilitation CenterP.O. Box 1232, Fresno, California, 93715Phone: (559) 459-6000 Ext. 5783Contact: Ray Greenberg E-mail: [email protected]

CONNECTICUTCHAPTERConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, Connecticut, 6492Phone: (203) 284-1045Contact: Jeff Dion Website: www.sciact.orgE-mail: [email protected]

DISTRICT OF COLUMBIACHAPTERSCI Network of Metropolitan Washington, NSCIAPlaza West 9, 51 Monroe Street,Rockville, Maryland, 20850Phone: (301) 424-8335Fax: (301) 424-8858Contact: Jesse ParkerE-mail: [email protected]: David Burds Website: www.spinalcordinjury.netE-mail: [email protected]

FLORIDASUPPORT GROUPSPeer Support Contact313 Spider Lily Ln, Naples, Florida, 34119Phone: (239) 353-5894Contact: Mindy Idaspe E-mail: [email protected]

Sea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, Florida, 32901Phone: (321) 984-4600Contact: Ellen Lyons-OlskiE-mail: [email protected]

Capital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, Florida, 32308Phone: (850) 656-4800Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine5165 Adanson St., Orlando, Florida, 32804

Phone: (407) 823-2967Contact: Robin Kohn Email: [email protected] : (407) 623-1070Contact: Carl Miller

HEALTHSOUTH - Support Group90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866Contact Vicki Yasova

Tampa General Hospital SCI Support Group2 Columbia Dr., Tampa, Florida, 33601Phone: (800) 995-8544

GEORGIASUPPORT GROUPSColumbus SCI Support GroupPhone: (703) 322-9039Contact: Ramona Cost E-mail: [email protected]

Central Central GA Rehab Hospital3351 Northside Dr., Macon, Georgia, 31210Phone: (800) 491-3550 Ext. 643Fax: (478) 477-6223Contact: Kathy Combs

ILLINOISCHAPTERSpinal Cord Injury Association of Illinois1032 South LaGrange Road, LaGrange,Illinois, 60525Phone: (708) 352-6223Fax: (708) 352-9065Contact: Mercedes RauenWebsite: www.sci-illinois.orgE-mail: [email protected]

INDIANASUPPORT GROUPCalumet Region Support Group2109 Cleveland St., Gary, Indiana, 46406Phone: (219) 944-8037Contact: Rita Renae Jackson Email: [email protected]

Northwest Indiana SCI Support Group1052 Joliet Rd, Valparaiso, Indiana, 46385Phone: (219) 531-0055Contact: Joe White E-mail: [email protected]

IOWACHAPTERSpinal Cord Injury Association of Iowa3936 NW Urbandale Drive, Urbandale,Iowa, 50322Phone: (515) 270-1522Contact: Tim Ascherl Phone: (515) 643-0469Contact: Joyce Ellens E-mail: [email protected]

KENTUCKYCHAPTERDerby City Area Chapter, NSCIA305 W. Broadway, Louisville, Kentuky, 40202Phone: (502) 589-6620Contact: David Allgood, PresidentWebsite: www.derbycityspinalcord.orgE-mail: [email protected]

SUPPORT GROUPFriends with Spinal Cord Injuries3785 hwy 95, Benton, Kentucky, 42025Phone: (270) 205-5675Contact: Anndrea CoffmanE-mail: [email protected]

MARYLANDSUPPORT GROUPKernan Hospital SCI Support Group2200 Kernan Dr., Baltimore, Maryland, 21207Phone: (410) 448-6307Contact: Jenny Johnson Website: www.kernan.org/kernan/

MASSACHUSETTSCHAPTERGreater Boston Chapter, NSCIANew England Rehabilitation Hospital,Two Rehabilitation Way, Woburn, Massachusetts, 01801Phone: (781) 933-8666

Fax: (781) 933-0043Contact: Kevin GibsonWebsite: www.sciboston.comE-mail: [email protected]

SUPPORT GROUPSBMC Support/Discussion Group7 West-Harrison Ave Campus, Boston,MassachusettsPhone: (617) 414-5000Website: www.sciboston.com/support.htm

Spaulding Support/Discussion Group 125 Nashua Street, Boston, MassachusettsPhone: (857) 222-5123Contact: Betsy Pillsbury Website: sciboston.com/support.htm

Whittier Westborough Support Group 150 Flanders Road, Westborough, MassachusettsPhone: (508) 871-2000 Ext. x2165Contact: Deb Website: sciboston.com/support.htm

MISSISSIPPISUPPORT GROUPMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, Mississippi, 39532Phone: (601) 969-4009Contact: Michelle Bahret Website: www.lifeofms.comEmail: [email protected]

MISSOURISUPPORT GROUPSouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807Phone: (417) 886-1188Contact: Marion Trimble Website: www.swcil.orgE-mail: [email protected]

NEVADACHAPTERNevada Chapter, NSCIA4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121Phone: (702) 988-1158Fax: (702) 951-9637Contact: Brian "Moose" Hasselman Website: www.nscia-nv.orgE-mail: [email protected]

NEW HAMPSHIRECHAPTERNew Hampshire Chapter, NSCIAP.O. Box #197, No. Salem, NH 03073Phone: (603) 216-3920Fax: (603) 432-1549Contact: Joan Nelson Website: www.nhspinal.orgE-mail: [email protected]

NEW YORKCHAPTERSGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY, 14602Phone: (585) 275-6097Contact: Karen GenettE-mail: [email protected]: (585) 275-6347Contact: Amy ScaramuzzinoE-mail: [email protected]

New York City Chapter, NSCIAMt. Sinai Dept of Rehab MedicineAttn: James Cesario1 Gustave L. Levy Place, Box 1240New York, New York, 10029Phone: (212) 659-9369Fax: (212) 348-5901Contact: James Cesario or John Moynihan Website: www.nycspinal.orgE-mail: [email protected]

SUPPORT GROUPSSCI Network of Central New YorkARISE, 635 James Street, Syracuse, New York, 13203Phone: (315) 464-2337Fax: (315) 464-2305Contact: Tammy BartoszekE-mail: [email protected]: (315) 247-0927Contact: Maria FroioE-mail: [email protected]

Long Island Spinal Cord InjuryPhone: (631) 221-9255Contact: Ron Quartararo Website: www.testaverdefund.orgE-mail: [email protected]

NORTH CAROLINACHAPTERNCSCIA3701 Wake Forest Rd., Raleigh, North Carolina, 27609Phone: (919) 350-4172Contact: Deborah MyersE-mail: [email protected]: Karen Vasquez E-mail: [email protected]

OHIOCHAPTERSNorthwest Ohio Chapter, NSCIA2654 Green Valley Dr, Toledo, Ohio, 43614Phone: (419) 389-6678Contact: Debbie BurkeE-mail: [email protected]: (419) 455-0748Contact: Jim BeckleyWebsite: www.nwonscia.orgE-mail: [email protected]

Northeast Ohio Chapter, NCSCIAc/o Jeff SchiemannPO Box 934, Chesterland, Ohio 44026Phone: (440) 813-2783Contact: Adam SweeneyPhone: (440) 442-5550Contact: Jeff SchiemannPhone: (800) 325-5605Contact: Metro Health

SUPPORT GROUPHillside Rehabilitation Hospital8747 Squires Lane, Warren, Ohio, 44484Phone: (330) 841-3856Contact: Rebecca LebronE-mail: [email protected]: (330) 889-2158Contact: Rick AckermanE-mail: [email protected]

PENNSYLVANIASUPPORT GROUPSRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, Pennsylvania, 16602Phone: (800) 873-4220

Greater Pittsburgh Rehabilitation Hospital2380 McGinley Rd., Monroeville, Pennsylvania, 15146Phone: (800) 695-4774Contact: Kristy NaumanE-mail: [email protected]

Delaware Valley SCIA2610 Belmont Ave., Philadelphia, Pennsylvania, 19131Phone: (215) 477-4946Contact: Bruce McElrath

Magee Rehabilitation SCI Resource& Support Group6 Franklin Plaza, Philadelphia, Pennsylvania, 19102Phone: (215) 587-3174Fax: (215) 568-3736Contact: Marie Protesto Website: www.mageepeers.org

Rehabilitation Hospital of York1850 Normandie Dr., York, Pennsylvania, 17404Phone: (800) 752-9675 Ext. 720Phone: (717) 767-6941Contact: Tammy Derk E-mail: [email protected]

SOUTH CAROLINACHAPTERNSCIA South Carolina Chapter500 Taylor Street Suite 403, Columbia,South Carolina, 29201Phone: (866) 445-5509Fax: (803) 376-4156Contact: Debra MatneyWebsite: www.scscia.orgEmail: [email protected]

SUPPORT GROUPSChester County Chapter Peer Support

The Chester Regional Medical Center,Rehabilitation Dept. 1 Medical ParkDrive, Chester, South Carolina, 29706Phone: (803) 482-4389Contact: Lee CarterE-mail: [email protected]

Columbia, SC Area Support Group500 Taylor St, Columbia, South Carolina, 29201Phone: (803) 252-2198Contact: Richard BridgesE-mail: [email protected]

Florence, SC Area Support GroupPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: [email protected]

Orangeburg, SC Area Support GroupPhone: (803) 829-2043Contact: Rebecca FelderE-mail: [email protected]

Rock Hill Area Support GroupPhone: (803) 366-5659Cotact: Bob AldersEmail: [email protected]

Spartanburg, SC Area Support GroupPhone: (864) 595-1947Contact: Dot Colson E-mail: [email protected]

TEXASCHAPTERRio Grande ChapterHighlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936Phone: (915) 532-3004Contact: Sukie ArmendarizContact: Ron Prieto Email: [email protected]

VIRGINIACHAPTEROld Dominion Chapter, NSCIAP.O. Box 8326 , Richmond, Virginia, 23226Phone: (804) 726-4990Contact: Shawn Floyd Website: www.odcnscia.orgE-mail: [email protected]

WASHINGTONSUPPORT GROUPSCI ForumUniversity of Washington Medical CenterCafeteria Conference Room B/C1959 NE Pacific StSeattle, Washington 98195Phone: (206) 685-3999Contact: Cynthia SalzmanE-mail: [email protected]

WEST VIRGINIASUPPORT GROUPWest Virginia Mountaineer Support GroupP.O. Box 1004, Institute, West Virginia, 25112Phone: (304) 766-4751(W) Fax: (304)766-4849 Contact: Steve Hill E-mail: [email protected]

WISCONSINCHAPTERNSCIA Southeastern Wisconsin1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215Phone: (414) 384-4022Fax: (414) 384-7820Contact: Bill Wright Mary RostkowskiWebsite: www.nsciasew.orgE-mail: [email protected]

For a current listing of Chapters and Support Groups,visit www.spinalcord.org, or call 800.962.9629.

If you cannot find a chapter or support group in yourarea, why not start your own? Contact the National Of-fice for assistance on our Helpline: 800.962.9629.


TELEPHONE 416.408.4252 toll-free 1.866.308.7722 E-MAIL [email protected] WEBSITE www.gluckstein.com

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