als philadelphia newsletter winter/spring 2013

newsgreater philadelphia chapter

“NeVer alONe. iN hOpe.” Winter/Spring 2013

patient profile: Don farrell

Military veterans develop ALS at twice the rate of the

general population, a statistic that is alarming to those who have served our country. Since his diagnosis, Don Farrell, an Air Force veteran with ALS from South Central Pennsylvania, has been determined to live life as anything but a statistic, and to live his life with love, purpose and creativity.

Part of Don’s purpose in life has been to use his talents and training to help others, which he has been doing for over 32 years. Don was a member of the Air Force from November of 1979 until October of 1984, where he specialized in bio-environmental engineering and health. Through his service, Don saw how people depend on each other at all stages of life in order to succeed.

Including his time in the Air Force, Don spent 32 years in

Ask any patient, family member, loved one, volunteer, friend, or

supporter of the cause. It happens seven days a year for our Greater Philadelphia Chapter, in seven different locations throughout our region with seven different celebrations of hope and light for a new year – all of which brings us one step closer to defeating ALS.

Walk days are also memorable for the staff members who plan each event. But it is not only one day– each Walk takes many months of planning. The experience is truly rewarding. In my first two and a half years with the Chapter,

I helped our incredible volunteer Walk Chairs and Committees plan the Rehoboth Beach and Bloomsburg, Jorge’s Walk to Defeat ALS® events. Working closely with these volunteers clearly showed the dedication and motivation behind the stories that connected these folks to ALS. Brian and Mary Lou Allen, along with Mary Lou’s mother Mary Ann Wollter, wished to get out there and do something in memory of Mary Ann’s husband Gene. A little spark ignited after they participated in the Ocean City Walk, and the desire to replicate the day of hope turned into the Rehoboth Beach Walk to Defeat ALS®, which marked its 5th year in September 2012.

Rosalba Snyder, whose father Jorge Rodriguez passed away from ALS, came

continued on page 8

together

Why We Walk by rebecca Pace

the Walk to defeat alS® is always a memorable affair.

continued on page 9

SaVe the date for the 2013

phillies phestival May 16!Join thousands of fans from our area as the Philadelphia Phillies once again get ready to strike out ALS! Just as the Phillies cover all the bases on the field, they help us cover all the bases in the fight against ALS through their generous support, raising over $13.5 million since 1984. Get autographs of your favorite Phillies, enjoy games and auctions, and show your support for the team and our cause.

Visit www.alsphiladelphia.org/Phestival2013 or call 215-643-5434 for details or to sign up for the Ad Book.

ALS patient Ron Wenger,

along with his grandson,

share a special moment with Jimmy Rollins

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repOrt FrOM the chair Jeff Abrams“The More Things Change, The More They Stay The Same.”

BOard OF directOrS

Chair, Board of TrusteesJeffrey L. Abrams, Esq.

Chair, Board of OverseersSandra Piersol

Chair Emeritus, Board of TrusteesBenjamin S. Ohrenstein, Esq.

Chair Emeritus, Board of OverseersPresidentEllyn C. Phillips

Vice ChairPatricia M. Lake-Quinn

SecretariesSandra PiersolChristina Martin

TreasurerBruce Berkowitz

Assistant TreasurerJulie Strong Karnavas

Rhoda AlbomGila AviramMichael BarkannDominick Bartone Julie Charlestein-BenjaminHolly BennettBradley A. Bingaman, Esq.Ellen BrossoSuzanne BruceTony BurnsMarcy CardonickR. Douglas CarpenterTed CollinsKonnie CrawfordAnn CutlerLaurence J. Delaney Karen Delaney Shideleff Michele DeVicarisArthur R. Ersner, M.D.Ellen B. FarberDeborah Ann FerreiraLawrence Finkelstein, Esq.Nancy GilesRobert GoudieThomas H. HippDavid KasoffFrank J. KellyJames R. KollerRobert A. Korn, Esq.Sheila LessinLeonard M. LodishMelissa Ludwig JoAnn MaranoKathryn A Meloni, Esq.Scott Nickle Doug ProctorDavid M. RicciMichael RifkinRaymond RoseWesley RoseLisa SchwabSuzanne Shorten Janet Unger Gerard VoitLauren Stevenson Yacina

We hear that one a lot, don’t we? Its

usually said as a lament, in a shrug of resignation, or desperation, in the wake of dashed hopes or disappointed optimism.

But I think that, sometimes, the “changed things/same things” combo is actually a good thing. It certainly has been for the Board of Trustees in 2012.

When I became Board Chair a year ago, I had the blend of hopes and fears that one would expect. I hoped that I would settle in and do a good job, and I feared the daunting task of following Ben Ohrenstein and trying to meet the standard he set for Board leadership. This was going to be a big change for both me and my colleagues on the Board, and my internal balance between anticipation and trepidation was constantly shifting. But I quickly found that this change was smooth and seamless because of the things around us that stayed the same: the professionalism of the Chapter staff and management; the selflessness and dedication of my fellow Board members; and the dignified courage of our patients and families. Those attributes of our Chapter and our mission are dependable, and give our Board a solid, reliable foundation on which we can build our decisions and our actions. Dependability yields clarity; when we as a Board know that we can depend on one another and the Chapter’s staff to get the job done, we can stay focused.

And we need to stay very focused because we have a lot on our plate. You don’t need me to remind you of the economic challenges we all faced over the past few years. While we are quietly hopeful that the worst is behind us, the Trustees have seen this as an opportunity to focus on the Chapter’s strategic future, so we can plan for growth while defending against the next, inevitable downturn. Last Spring we began a comprehensive Strategic Planning process, designed to thoroughly examine where we are as an organization, and chart a course for where we will go over the

coming years. When I say “comprehensive”, I mean it: the Strategic Planning Task Force, ably and energetically co-chaired by Ben Ohrenstein and Janet Unger, committed to a brainstorming, meeting, data-collecting and reporting schedule that was thorough, physically and intellectually rigorous, and time-consuming. The Task Force, made up of Trustees, Overseers and staff, broke out into six working groups, each responsible for investigating and reporting on one key strategic priority and its challenges. Over the Summer they conferred, interviewed, researched, observed, crunched numbers, compiled data and figured out what it meant to the Chapter’s future, and then went back and checked it all again before reporting their findings upstream. I was humbled by the care and seriousness with which these already-busy people attacked this project. But I was not surprised, because this crew’s dependability is one of those things that, day after day, just stays the same.

Several of those Task Force members are long-time Trustees who, for one reason or another, are stepping down this year. Larry Delaney and Dale Shimer are term-limited, but will remain key members of Board committees after their terms expire. Kent Griswold, chair of the Patient and Family

From the executive director ...... page 3research Update ..................... page 4abrams in home care program .. page 5Save the date for alS advocacy .. page 6 ira charitable rollover ............ page 6past events ............................. page 7patient profiles ......................pages 8Walk Update ...................pages 10-11 past events .....................pages 12-13empowering people with alS .. page 13holiday party......................... page 14Nurturing the Nurturer ........... page 15in Memoriam......................... page 15calendar of events ................. page 16

TablE of ConTEnTswInTER/spRInG 2013

continued on page 3

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FrOM the executive director Jim Pinciotti

I begin this first newsletter article

of the year with a sincere wish for happiness and all things good to you and for

demonstrable progress in research for therapies and a cure for ALS!

As 2013 gets underway, I am energized by our focus on the families we serve and our promise “Never Alone, Together in Hope”. That is how all great things are accomplished – together. There are many quotes and axioms about this that are familiar – “it takes a village” African proverb; “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead; “Coming together is a beginning; keeping together is progress; working together is success.” Henry Ford.

This is very evident in the fight against ALS. It takes doctors, nurses, therapists, social workers, technology, research, clinical trials, associations, big government, small government, the Chapter, and a host of others to help families deal with ALS and to solve the mysteries of this disease. Every step of the way, you play a part.

Here is an excerpt from a note we recently received from a patient:

Last week when my wife and I were at our ALS Clinic visit, I told the doctor something that I would like to share with you as well. We simply don’t know how we would have been able to cope with my ALS issues as well as we have if it weren’t for the extraordinary support of your ALS Association and the ALS Clinic. I told the doctor I couldn’t imagine how people that live in most other parts of the country can deal with ALS without access to the truly exceptional support you all provide us. We are very, very grateful to you for having the energy and commitment required to build and sustain such valuable organizations.

I share this to say thank you to all of our supporters and to illustrate just how vital your assistance is to our mission and to our families. Much of our communication to you is about the success of our events, our fundraising, our programs and services –which make all of us justifiably proud. We tout research discoveries and new clinical trials, seminars and support groups. What we communicate less often is how important each event, each volunteer, each tribute gift, each donation is

to the mission of providing help and hope EVERY DAY. We need and value each volunteer, each Community Ambassador, each Community Partner Event organizer, each supporter and each donor. Everything we do is paid for with fundraised dollars and we could not exist, let alone be the largest Chapter in the nation, without each and every dollar we receive. I ask you to keep us in your thoughts and in your plans as you go through this New Year. Attend an event, designate The ALS Association in your workplace giving, make a gift in honor of a special day or in memory of a special friend, tell a colleague about our Chapter and get them involved.

Together we will continue to “build and sustain” our valuable organization. ]

“As 2013 getsunderway, I am

energized byour focus onthe families

we serve andour promise

‘Never AloneTogether in Hope

Services committee, is leaving the Board with his legacy of hard work, clear thinking and compassionate leadership as a shining example for us all. The demands of a growing, busy family and a successful career have compelled Hara Jacobs to move on, but I plan to reach out for her calm and incisive judgment as often as I can. There is not enough space in this column for me to adequately express our gratitude to these fine people. But these changes, too, will be buffered by the added

brains and brawn of a more recent crop of Trustees (some of whom will be joining us early this year), who won’t so much fill shoes, as bring their own sturdy combat boots to our ongoing campaign. So we change, we plan, we adapt, and we keep moving ahead, knowing that, as we do so, we will always get support, safety and inspiration from those Things That Stay The Same.

Our best wishes to you all for a healthy, peaceful and hopeful 2013. ]

,’.”


New Understanding of protein recycling in alSNEW GENES & NEW PATHWAYS REVEAL POTENTIAL NEW TARGETS FOR TREATMENT

Proteins are the workhorses of all types of cellular processes and

make up much of the bulk of each cell. When proteins wear out, they must be broken down and recycled, so that they do not clog up the cell and interfere with other proteins. In people with ALS, defective proteins accumulate in the motor neurons, leading researchers to believe there is a problem with the protein recycling systems that may cause or worsen disease.

Worn out or defective proteins are broken down within the cell by two different processes or pathways. These are known as the ubiquitin-proteasome pathway and the autophagy pathway. The first is typically used for individual proteins, while the second is used for protein

complexes and large subcellular units called organelles. Recently, researchers have begun to focus intently on both processes for clues to understanding their role in ALS.

“Autophagy is now emerging as a highly selective quality control mechanism,” said Anne Simonsen, Ph.D., of the Institute of Basic Medical Sciences in Oslo, Norway. Her group has found that an autophagy-linked protein called ALFY (autophagy-linked FYVE protein) plays a key role in aiding the removal of protein aggregates, including those seen in neurodegenerative diseases such as ALS and Huntington’s disease. Several ALS-linked genes appear to take part in this clearance pathway, and Dr. Simonsen’s work is aimed to understanding it further, ultimately to find targets for enhancing it as a therapeutic strategy in ALS.

Another key protein in the autophagy system is called Beclin 1. Eichi Tokuda, Ph.D., of Umea University in Sweden explained that in a mouse model of ALS, loss of Beclin 1 accelerates the disease process, suggesting that this protein’s function normally helps slow the disease. It likely does that by promoting autophagic clearance of aggregates of the mutant SOD1 protein. This result

leads to two conclusions: 1) it supports the rationale for therapies that reduce mutant SOD1 and 2) suggests that boosting autophagy may be one such strategy.

A recently discovered ALS gene, ubiquilin 2, may also take part in the pathway. Faisal Fecto, Ph.D., of Northwestern University in Chicago, has shown that ALS-causing mutations in the gene lead to the accumulation of ineffective components of the pathway, suggesting that interruption of the process may contribute to the disease, and again strengthening the case that boosting autophagy may be therapeutic. ]

reSearch Update

researchers at the amyotrophic lateral Sclerosis (alS) Motor Neuron disease (MNd) international Symposium met for three intense days in december 2012 to discuss the newest research on all aspects of alS. Below is the summary of one of these important topics:

“In people with alS, defective proteins

accumulate in the motor

neurons, leading researchers to

believe there is a problem

with the protein recycling systems…”

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ABRAMS IN-HOME CARE: relief for Families with alS“My family could not function without the hours of care we receive from Vera and capri”

In April 2011 Robert Janssen was diagnosed with ALS. This

former accomplished athlete and occupational therapist relies on his two caregivers to get his family through the week. “We are incredibly grateful for the Howard I. Abrams In-Home Care program that provides the services of our two caregivers, Vera and Capri, free of charge.” While Robert’s nine year old twin daughters and wife Melissa all pitch in to help, Abrams caregivers give them a much-needed break to go to the market, exercise, or work.

What do caregivers do? The better question is “what DON’T they do?” From bathing, to feeding, to laundry, caregivers are essential to an ALS patient’s well-being. The Abrams program relieves some of the stress for family caregivers. It is one of the most vital services the Chapter provides. ]

(left to right) Arabella, Melissa, Robert and Paris Janssen are thankful for the chapter’s Howard I. Abrams In-Home Care Program.

Please give today at www.alsphiladelphia.org/Abrams2013

cover all the bases

did you know? in 2012,the abrams in-home care program supported 22,361 hours

of in-home care for 106 patients with alS. your donations really do make a difference!

SAVE the DATE alS expreSS!JUne 15, 2013

Join Bob Janssen, friends, family, and hundreds of

cyclists for a ride through scenic southern NJ for the only ride dedicated to battling Lou Gehrig’s Disease. Enjoy the support of wonderful volunteers who cheer-on the riders and help provide a worry-free cycling experience. Upon arrival at the end-point in Wildwood, NJ, the summertime fun begins! No other charity bike ride in the area offers an exceptional endpoint like this! Each rider receives two complimentary passes to Morey’s Piers Amusement and Water Parks.

For more information or to sign up today, visit www.als-express.org or email Julie McKeever at [email protected]


The ALS Association has had many successes in

advocacy over the years, and that is entirely because of our ALS Advocates. Through your efforts, Congress has supported millions of dollars for ALS research and launched the national ALS Registry at the CDC.We’ve also ensured that people

with ALS received the Social Security benefits they need and that veterans with ALS received

the best in care. You made this happen by sharing your personal story and making sure that families with ALS have a voice in Washington.

Our advocates also convinced the Pennsylvania State Legislature to pass a $300,000 line item in the 2013

budget for ALS Patient Services. This funding is critical to make sure that people with ALS continue to receive quality care and that caregivers are able to maintain their quality of life as well.

Now we need you to give voice to alS again. Join us for pennsylvania State advocacy day on Monday, April 22 in harrisburg to continue our state funding and save the date for the National alS advocacy day and public policy conference May 8-11. This will be the first year that Advocacy Day is not on Mother’s Day weekend, so we hope you can attend.

We are also beginning an aggressive advocacy push in the state legislatures in New Jersey and Delaware and need your help to succeed. Contact Tony Heyl, our Public Policy Manager, at [email protected] to find out how you can help.

Thank you for making ALS Advocacy such a success. Let’s keep up the good work together!

Save the Date for alS advocacy!

the ira charitable rollover IS BACK! if you are or will be age 70½ or older in 2013, you may be able to

take advantage of a unique opportunity to build upon your philanthropic support of the fight against lou gehrig’s disease.

tO qUaliFy:

• You must be age 70½ or older at the time of the gift.

• Transfers must be made directly from a traditional IRA account by your IRA administrator to The ALS Association Greater Philadelphia Chapter.

NOTE: Funds that are withdrawn by you and then contributed to us do NOT qualify, and would be considered taxable income. Also, gifts from 401k, 403b, SEP and other plans are not eligible.

• Gifts must be outright. Distributions to donor- advised funds or life-income arrangements such as charitable remainder trusts and charitable gift annuities are not allowed.

Other cONSideratiONS:

• Although the distribution will be free from income tax, it will not generate an income tax charitable deduction.

• IRA Charitable Rollover gifts do count towards required minimum distributions for the year.

if you have an ira account, please take a few moments to determine whether this unique opportunity is appropriate for you to consider. if you have questions or would like additional information, please contact Jeff cline, chief development Officer, at 215-664-4127 or [email protected].

On January 1st of this year Congress passed the American Taxpayer Relief Act of 2012

(ATRA), which extended through 2013 a special provision

to make tax-free charitable gifts through traditional Individual Retirement Accounts (IRA).

Individuals can direct gifts totaling up to $100,000

from their traditional IRAs to qualified charities such as

The ALS Association Greater Philadelphia Chapter --

without incurring federal income tax on the withdrawal.

This IRA Rollover provision may provide you with

an excellent opportunity to make a gift during your lifetime

from an asset that would be subject to multiple levels of taxation if it remained in your taxable estate.


alS aNNUal lUNcheON Citizens Bank President daNiel k. Fitzpatrick hONOred

More than 400 well-wishers filled the Millennium Ballroom at Loews

Philadelphia Hotel on November 16th to honor Citizens Bank President and CEO Dan Fitzpatrick at the Chapter’s Annual Luncheon. Phillies Director of Public Affairs, Scott Palmer, emceed, while speakers included Phillies General Partner and President David Montgomery; Lyn Montgomery, Nancy Giles, and Sherry Clothier of Phillies Charities; Senior Vice President of Citizens Bank Frank Kelly; and Clinical Manager of ALS Assistive Technology Alisa Brownlee who gave a fascinating presentation on how advances in technology help our patients communicate.

The Annual Luncheon also highlighted the 2012 Phillies Phestival and the incredible support of the entire Phillies organization for nearly three decades. This year’s Phillies Phestival raised $858,340 for the Chapter.

The luncheon raised more than $225,000. Sponsors included The Philadelphia Phillies, Citizens Bank, the Farber Family Foundation, The Ron Krancer Family, Chris Kanter, Parx Casino and Marianne and Jim Koller. ]

Top: The Phillie Phanatic gives a big hug to ALS patient Barbara Levonchuck of Stratford, NJ.

2nd from Top: The honoree meets ALS patient Paul Shymansky of Berwick, PA.

3rd from Top: (left to right) Lyn Mongtomery and Sherry Clothier present the Phillies Charity donation of $858,340 to Chapter Executive Director Jim Pinciotti.

Bottom: (left to right) Ellyn Phillips, Chapter President; Nancy and Bill Giles of the Phillies; honoree Dan Fitzpatrick; Luncheon Chair Frank Kelly of Citizens Bank; and Jim Pinciotti, the Chapter’s Executive Director.

paSt events continued on page 12

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…continued from cover

Environmental Health, Safety, and Emergency Response in consulting and in public service with the Commonwealth of Pennsylvania, where he worked for PennDOT and the Department of Environmental Protection. His unique perspective as a person with ALS who understands emergency response was very helpful this October as he provided his own expertise on how to prepare for Hurricane Sandy.

Don’s purpose, to help others, went far beyond his important work on environmental protection and emergency response. He has volunteered at Hospice and Community Care in Lancaster County and since his diagnosis has been assisting Penn State medical students at Hershey Medical Center Department of Humanities where students will chronicle his life with ALS and produce a video to educate other medical students. Time and again, Don has used his own personal experiences to help others gain the knowledge they need.

That purpose is still just one third of Don’s story. It is difficult to

separate the importance of love and creativity in Don’s life because the two are so intertwined.

Since Don was a boy, he has enjoyed singing. He saw it as a balance of art and science, two things

he loves, and got into barbershop singing competitions. Not only did singing bring joy by itself, it also brought him his wife Joan. Don and Joan met through singing and became founding members of A Cappella Pops, a mixed voice show chorus.

While ALS has taken Don’s voice, his wife Joan continues to sing and together they have created a thriving group to bring together talented singers from the area. Their group is online at www.acappellapops.com

Don is deeply thankful to his wife and caregiver Joan and to his children Jessie and Sarah for their support.

Sarah helps to organize a team at the Lehigh Valley Walk to Defeat ALS® called A Cappella Love Story, which is both a good way to raise money and a perfect description for Don’s life. Through that team and team Mission NI at the Hershey Walk to Defeat ALS®, Don has raised over $3,000 through our walks.

The Farrell family participates in the Walk to Defeat ALS® because they see it as a chance to give back to the Chapter and to help others. Don is grateful for the support from the ALS Association Clinic at Hershey Medical Center and for the help from the Paralyzed Veterans Association and the VA Medical Center.

The love and creativity do not stop there though. Don published a poem in the Wild Onion, a judged annual publication at Hershey Medical Center and he has shared a few of his poems with the Chapter to inspire others. He has also written a book “A Little Book of Life – Insights by a Terminal Patient” and has created a website to connect ALS patients, caregivers and families as well as to promote creative writing: http://donfarrell.pndonline.org/

Even before Don Farrell put on his Air Force uniform, he was dedicated to a life of service. He just didn’t know that his service would include assisting people during emergencies, sharing his own story to inspire others, and sharing a creative spirit through singing and writing. He has continued to make his country, his family, and our Chapter proud. ]

patient profile: Don farrell

ALS 1: FatigueMy persistent companion never asks permission to

live in my shadow, demanding attention, tugging on my arms,

grasping my shoulders, dragging body parts

back behind boulders, his morbid humor mocks

my physical stature,my muscles, my focus on

life put out to pasture, effortless, endless and

tireless is he, an envious presence, a mere nuisance to me.

— Don Farrell —

Don Farrell and his wife Joan


Why wE walK continued from cover

to me in early 2011 also saying she wanted to “do something.” And with a little encouragement and Chapter support, the Bloomsburg, Jorge’s Walk to Defeat ALS® was born, raising over $50,000 in its second year. The passion of volunteer Walk Chairs like Rosa and the Wollter/Allen families made those days exceptionally memorable for me as a member of the Chapter events staff.

When I was given the opportunity to work on planning and executing The Greater Philadelphia Walk to Defeat ALS, I couldn’t have been more thrilled to take on the project. The Walk had a growing committee of people who inspired me each day in the months leading up to the event at Citizens Bank Park on November 3rd. The spirit of families like the Delaneys – Karen Shideleff who has ALS, and her sister Kathy Thomas, both of whom jumped on the committee, made a huge difference. Gerry Voit, a devoted

husband who lost his wife Kathryn just recently to the disease, was more determined than ever in his eleventh year of involvement. He took home the award for Highest Individual Fundraiser while Karen and her team, Delaney Strong, took home the award for 3rd Highest Fundraising Team. To see this kind of energy from people so deeply affected by ALS was quite moving.

Other aspects of the event planning process and Walk Day are especially inspiring to the events staff. We all followed the growing donation totals for 11 year old Kayla Wilson, as she gradually reached the Extra Mile Club goal in honor of her aunt at the Rehoboth Beach Walk. I will never forget the joy of ten year old Kailea and her six year old sister Teagan Heston tying for first place for the Highest Youth Fundraising Award at the Greater Philadelphia Walk. Walk energy is reinforced by teams of tens and even hundreds

in bright shirts proudly coming together, giving and sharing and doing what they can to help. Families at Citizens Bank Park continuously thanked staff, but I wanted to thank them for all they do and continue to do to help us reach our common goal. Without the enthusiasm of our Walkers, volunteers, and supporters who continue to inspire us in moving forward each day, we could not do what we do.

The Walk to Defeat ALS® is a special seven days, and truly rewarding each step of the way. Your Events Staff thanks you infinitely, and we can’t wait to see what the 2013 Walk Season holds in store. ]

Our community ambassadors are a vital part of our work to defeat ALS, spreading awareness of Lou

Gehrig’s Disease at events throughout our region. Join us for our next Community Ambassador training on Saturday, March 16th from 10:00 AM to Noon in our Ambler office to learn how you can get involved. To sign up, email Rebecca Pace at [email protected]

Sign up for a Walk to Defeat ALS® today at www.alsphiladelphia.org

As the temperatures get colder, it’s time to think about warming up with Hot Chocolate! Amazing vendors from throughout our region are preparing for another delicious day at the most anticipated event of the season on MARCH 14TH, and all to help fight ALS. Don’t miss The ALS Association’s sweetest event at the Adventure Aquarium in Camden, NJ.

Visit www.alsphiladelphia.org and sign up today!

SaVe the date for

Kailea & Teagan accepted their award from Rebecca Pace at the Greater Philadelphia Walk to Defeat ALS®


WalkS to defeat alS®

tOp three teaMS ON Walk day:

1ST PlACE – aMeriSOUrceBergeN / MarchiNg FOr Mike 2Nd PlACE – teaM kOller

3rd PlACE – delaNey StrONg

top individual Fundraiser: gerry VOit, Kathryn’s Krew

top youth Fundraiser: kailea & teagaN heStON, Angels in the Clouds

top corporate team: aMeriSOUrceBergeN / MarchiNg FOr Mike

greater philadelphia Walk to defeat alS® 11/3/12 Walk Fast Facts total raISeD – $633,203 # of WalkerS – 4,800 # of teamS – 190

tOp three teaMS ON Walk day:

1ST PlACE – MaJeStic athletic 2Nd PlACE – SaMUel adaMS 3rd PlACE – dONNa’S dUgOUt

top individual Fundraiser: dONNa katcher, donna’s dugout JUdy parSONS, Majestic Athletic

top youth Fundraiser: alexa ayala, Team Ayala

top corporate team: MaJeStic athletic

top School team: Fccla WalkiNg tO d’Feet alS

lehigh Valley Walk to defeat alS® 10/13/12 Walk Fast Facts total raISeD – $150,429 # of WalkerS – 1,100 # of teamS – 70

(tie)

in 2012, the chapter’s Walk to defeat alS® program combined to raise over $1.5 million. Sign up for a Walk to defeat alS® near you at www.alsphiladelphia.org and watch our recap video at www.youtube.com/alsphiladelphia.


2013 Seaside Board... Walk to defeat alS®

Saturday, May 11

**NEW lOCATIONFirstEnergy Park2 Stadium WayLakewood, NJ 08701

Registration: 9:00 am Walk starts: 10:00 am

2013 Bloomsburg, Jorge’s Walk to defeat alS®

Saturday, May 18

Bloomsburg Town Park Bloomsburg, PA


2013 hershey Walk to defeat alS®

Saturday, June 1

On the campus of Penn State Milton S. Hershey Medical Center and Penn State College of MedicineHershey, PA


11

Our sponsors help make our Walks to Defeat ALS® a success! To learn more about the benefits of becoming a walk sponsor, please call the Chapter office at 215-643-5434 or toll-free 1-877-GEHRIG-1.

Accessible Vans & MobilityAir ProductsAmneal Pharmaceuticals LLC Atlantic City ElectricARAMARKAuntie Anne’sBayada Home Health Care Bennett Auto GroupBerwick OffrayBinns Family FoundationBinswanger Brinker CapitalColligas Family MarketsContempora Fabrics Cravath, Swaine & Moore LLP CVM Autopark Dodge Subaru VolkswagonDel Monte

DeloitteDental EZThe Dow Chemical Company Dynamic Rehab Solutions, LLCELAP ServicesEsperanza and David Neu in Memory of Mike Kilpatric Family Home MedicalFirst GenerationFox SubacuteFriends of Dustin J. MyersGeisinger Health South Rehabilitation HospitalGiant Food MarketsHenry Schein® Cares Hershey Entertainment & Resort CompanyHotHotHot Entertainment HOVUS, Inc.

John Chou and Teresa Wallace in Memory of Mike Kilpatric Jorge’s Orange TreeKenworth of PennsylvaniaBill & Jean KirchhoffLehigh Valley Dairy FarmsLehigh Valley Health NetworkLehigh Valley Iron PigsLewes AutomallMajestic AthleticMangar Medical Packing The Martin FamilyMcMahon Agency, Inc.Morgan, Lewis & Bockius LLP M&T Bank Penn Emblen CompanyPJ’s All Natural 100% Beef Steak Penn State Milton S. Hershey Medical Center

Pricewaterhouse Coopers Rampmaster S. Walter PackagingSandoz Inc. Sea FindsStevens & LeeKelly & Al SlipakoffTCC Cellular ConnectionToni and Steve Collis in Memory of Mike Kilpatric Turkey Hill DairyUniversal Supply Co.US Bank UTZVCI/Accessible Vans & Mobility WalmartWMDTYards Brewing Company

We thaNk OUr Walk to Defeat alS® SpONSOrS

For More information, visit www.alsphiladelphia.org or call 1-877-GERHIG-1like our Facebook page www.facebook.com/gpcWalktodefeat

TITlE SPONSOr: amerisourceBergen

PrESENTINg SPONSOrS: Buchanan ingersoll & rooney pc, certainteed corp., cleveland Brothers, pride Mobility, Sap, Shoprite & their customers, Watson pharmaceuticals

WALK BecaUSe yOU caN!


more paSt events continued from page 7

Mountain View high School Bake Sale

November, 2012

The Mountain View High School Bake Sale was the senior project of Kerry Gaynor, who wanted to do something to help out after a close friend had a family member diagnosed with ALS. She worked hard to get all the baked goods to sell over the course of three days during lunch time at her high school. The project was a success, raising close to $200 to help patients and their families living with ALS. We thank all of the students and faculty at Mountain View High who participated in this bake sale and helped raise much needed funds for people and families affected by ALS!

ryan’s pub annual golf Outing

Monday, October 8, 2012

Ryan’s Pub Annual Golf Outing was held this year at the Radley Run Country Club in West Chester, PA. For $125, golfers came out to support a great cause and received lunch, greens fees, a cart, and a beef and beer afterwards. The day was not only successful, but with good weather, everyone had a wonderful time on the course. Thanks to all of the participants and Radley Run Country Club, the event raised an impressive $5,100!

punkin chunkin

Saturday, October 20, 2012This year’s Punkin Chunkin event found itself at a new venue and breaking a new record of funds raised! The Prickett’s Punkin Chunkers raised well over $6,200 at the October 20th event. The weather was beautiful and the new location proved to be a big hit. They were able to fit even more machines and have the pumpkins fly even further. A big thank you to the Prickett’s Punkin Chunkers for another fabulous event!

Friends of John Fineran Beef and Beer Saturday, October 27, 2012This year’s Friends of John Fineran Beef and Beer was yet another big success, raising $3,600 in just one evening! Deb Fineran put together a fun night with a live band, dance contests, good food, auctions and a 50/50 raffle and as always, a great group of friends and family to provide a wonderful sense of support throughout the whole evening. We are already looking forward to next year’s beef and beer which will be held in February of 2014 and hearing more wonderful stories from the event. Thanks to all who attended and contributed!

temple for alS charity concertFriday, december 1, 2012

On Saturday, December 1st, a group of Temple students organized and put on a charity concert to benefit The ALS Association Greater Philadelphia Chapter. With a number of local bands playing, attendees had the chance to dance all night! Food and drinks were available with a huge selection of raffle items which helped the event raise over $4,000. Congratulations and thank you to event planner Frank Fusaro and the rest of the Temple for ALS group on a very fun and successful night!

Scott Mackler is not one to let ALS keep him down – despite living with the disease for 14 years, he

still runs a lab at the University of Pennsylvania. So, it was no surprise that despite drenching rains making the course unsafe and causing the cancellation of the Mackler 5K, the October 28th event still raised close to $70,000 for the Chapter’s Scott A. Mackler, MD, PhD Assistive Technology Fund. Kudos to organizer Joe Santowski and friends and family for serving lunch to anyone wishing to dine at Temple Beth El in Newark, DE and Scott’s University of Pennsylvania fraternity brothers who ran in Scott’s honor, carefully navigating the slippery course conditions.

Sadly, Scott’s mother and Run mainstay, Helen Mackler, passed away on October 27 and her funeral occurred on the day of the Run. Helen Mackler will always remain a part of this event in spirit.

Scott Mackler 5k Run the ShOW MUSt gO ONSunday, October 28, 2012


January 18th 2013 marked the 10th Annual Monzo Madness dance-a-thon event, raising $30,000, the most money ever in its history! The event began in 2003 to honor Tracy Naval’s sister Ms. Monzo, who had ALS. As the first year since its inception without Tracy Naval on board to plan, Washington Township High School was concerned that this year’s total would disappoint. Instead, they increased their number of participants by nearly 75 students and raised more money than ever. Teacher April Renzetti stepped in as the primary planner behind the event and proved that Monzo Madness not only raises some serious money to help us defeat ALS but will also stand the test of time and continue to grow year after year. In addition to being our Community Partner Event of the Month, the Washington Township High School InterAct Club was named our February Volunteers of the Month for their dedication to fighting ALS. Congratulations to all the students, faculty and event planners for Monzo Madness – we appreciate all that you do!

Ten Years of MONzO MadNeSS!Friday, January 18, 2013

My ALS began in my legs and as time went on I began having

trouble walking distances and felt very fatigued. I was against using a wheelchair because I wasn’t going to allow this disease to beat me. What I realized though was that I was not able to enjoy the things that were supposed to be fun.

I was keeping others from enjoying their time. So we started to rent wheelchairs everywhere we went. However, we would sometimes run into problems trying to find rentals

and the chairs were frequently costly or unavailable.

In January of 2010 we were planning our trip of a lifetime to Vancouver, Canada and an Alaska cruise and land tour for 17 days. We realized that it would be difficult at times to find rentals and we would be wasting

precious time to get them instead of enjoying our vacation and sightseeing. They could also be costly. My husband Paul decided to call Wendy Barnes at the greater philadelphia chapter to see if we could get some help with getting a loaner chair. Wendy got Paul connected with the ALS Association’s Marjorie Shimer durable Medical equipment loaner closet.

In no time I received a call to set up delivery of a transport chair. They told me that I could use the chair as long as I needed it and I did not have to return it after our trip was done.

Having this chair has been a gift to us. It has allowed us to never have to worry about getting around and enjoying the places we visit. I don’t have to worry about the fatigue and it allows me to spend hours enjoying all there is to do where we go. I don’t feel like I am missing anything or that I am holding other people from enjoying the moment. We don’t waste time trying to get a rental or worry over the cost.

In two and a half years our transport chair has logged thousands of miles by air, sea and land, taking us to Canada, Alaska, California and numerous times to Florida. We have visited and made numerous trips to Busch Gardens, Sea World in Orlando and San Diego, national parks, numerous trips to zoos all over, concerts, Phillies games and so much more.

Thank you to the Greater Philadelphia Chapter for empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with care and support. ]

the marjorie Shimer Durable medical equipment fund empowering peOple With alS by Donna katcher


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1.Resource Groups

This is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and friends, to attend. Please call the contact person for each group to confirm actual dates, or you may request

to be placed on the Resource Group mailing list. This mailing is distributed quarterly and lists upcoming dates, times, and other important information. Also, be sure to RSVP to the facilitator, if specifically requested.

Bereavement - ambler, paA five-session series is available forpeople who have lost someone to ALSin the past 2 years.Info. & RSVP: Jennifer Klapper215-726-8724

caregivers & Family Members - ambler, paBi-monthly - Info. & RSVP: Karen Dawson-Haines215-487-4519

Men as caregivers- ambler, paInfo. & RSVP: Brenda Edelman, LCSW, BCD215-643-5434

For Women Only (Women with alS)-ambler, paInfo. & RSVP: Jennifer Klapper, RN, MSN, CNS-BC215-726-8724

caregivers & Family Members - Brick, NJInfo. & RSVP: Patricia Schaeffer, RN732-239-4724 orKathy Valentino, LCSW609-433-6333

cherry hill Support group - cherry hill, NJInfo. & RSVP: Jennifer Klapper, RN, MSN, CNS-BC215-726-8724

delaware - Wilmington, deInfo.: Wendy Strowhouer, RN302-547-8482

harrisburg - hershey, paInfo. & RSVP: Judy Lyter, LPC, RN717-566-1700

lehigh Valley - allentown, paInfo.: Wendy Barnes, MSW, LSW610-797-2102

lancaster, paInfo. & RSVP: Joan [email protected]

Monmouth/ Ocean county-red Bank, NJInfo.: Patricia Schaeffer, RN732-239-4724 orKathy Valentino, LCSW609-433-6333

Northeast pa resource group - Bloomsburg, paWilkes-Barre, paInfo.: Jennifer LaRegina, RN570-436-4529

Williamsport, pa Info.: Judy Deacon, B.A.570-436-4529

Please go to www.alsphiladelphia.org - Patient and Family Services for additional information about all resource groups.

holiday PARTYHappy Holidays!!! We kicked off the holiday with 300 patients and family members making our annual Holiday Party the best one yet. There were smiles galore with a special appearance by the Phillie Phanatic, numerous therapy dogs, and of course the Holiday Party wouldn’t be the same without our friends at HotHotHot Entertainment. A special thank you to them for the amazing way they entertain us! It was a day of coming together - meeting new friends and catching up with some old. Patients and families let loose and welcomed the Holidays in style!

OUR VOLUNTEERS MAKE THE DIFFERENCE. We need your help to set up events, send mailings, and to represent our alS community. to get involved, contact rebecca pace at [email protected] today!

Students from University of the Sciences in Philadelphia help each year with our snacks and

refreshment table at the Greater Philadelphia Walk to Defeat ALS®.

The Morris family loved the event!


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Professional StaffEXECUTIVE DIRECTORJames V. pinciotti

DIRECTOR OFPATIENT SERVICESBrenda edelman, LCSW, BCD

CONTROLLERandrew g. lash, CPA

CHIEF DEVELOPMENT OFFICERJeff cline

ANNUAL GIVING MANAGERdonna cleary

COMMUNICATIONS MANAGERtony heyl

MENTAL HEALTH NURSESJennifer klapper, RN, MSN, CNS-BCconnie eriksson, RN, CNS-BC

CLINICAL MANAGER, ASSISTIVETECHNOLOGY SERVICESalisa Brownlee, ATP

NURSE COUNSELORJudy lyter, RN, MS, LPC

STAFF NURSEMaureen reid, RN, BSN

REGIONAL NURSECOORDINATORSgail houseman, RN, APRN, MSNJennifer laregina, RNSue Walsh, RN, MSN, CS

SOCIAL WORKERSWendy Barnes, MSW, LSWMelissa coll, MSWShelley S. hill, MSW, LCSWMaryann Jones, LSW, MSWSusan Schwartz, ACSW, LSWMary Beth tomczak, BSW

EVENTS DIRECTORallison Walker

EVENTS MANAGERJulie Morrison Mckeever

EVENTS & VOLUNTEER COORDINATORrebecca pace

EVENTS SPECIALISTali Nielsen

DEVELOPMENT COORDINATORJoan Borowsky

IT DIRECTORNora isaac

DATABASE MANAGERheather pecharo

DATABASE COORDINATORalexandra Weaver

DATABASE SPECIALISTVictoria hamilton

GIFT PROCESSORdavid tassoni

ADMINISTRATIVE STAFFevelyn thomanPatient Services AssistantMary SharpReceptionist/Office AssistantMaryann VagnoniExecutive Assistant

TRANSPORTATION VAN DRIVERSJohn connerthomas r. Mitchellgerry Neal

OFFICE MANAGERerin Farrell

Maria AntonetzKent BollmanNellie BeitlerNancy BidlackNancy BoyleBarbara BrownstoneCandis CarterDebra CodyDavid CompariDoris CronkJoseph CummingsJoseph DadettoFred DontonCarolyn FisherWalter FullmerEdward GombergMarian GouldeyJohn GrosserJohn HaagWilliam HaggertyJoseph HanuscinCharles HartingMary HartzelBernice HeebnerDonald HendershottTheodore HigbyAudrey HughesKathleen HuntChrista IrickDrexel JohnsonJohn KaneLoretta KazawicCorrine KingLinda LiebermanKen LundvallMarlene MasiEdward McFeelyJoseph McNallyStan MorantzAlbert MorisonJudith MurrayColleen O’ConnorAnna ParabakLarry PerrineDoris PhillipsCharles RogersMondell RogersKathleen RudgunasKenneth RussellPhillip SellersGrace SmithKaren StruckRobert TerrillBettina VarnerAlbert WayEileen WayRobert WagermanCaryl WilkinsPatricia WiltKenneth WynnKezhou Xie

NUrtUriNg the NurturerWe LOVE Nurturing the Nurturer! It’s an entire day we get to spend with our caregivers, a group of truly special people. This year’s event held on November 11th was sponsored by Home Helpers and welcomed 70 guests! After morning support groups caregivers were provided a delicious lunch followed by an afternoon of fun including flower arranging, jewelry making, manicures, pedicures, massage plus professional shaves and Wii sports for the guys. A special thank you to all of our Nurturing volunteers and donors for making the day such a special one!

NON-PROFIT ORG. U.S. POSTAGE

PAIDPERMIT NO. 215

WEST CHESTER, PA 19382

the alS association (lou gehrig’s disease)Greater Philadelphia Chapter321 Norristown Road, Suite 260Ambler, PA 19002-2755

phone 215-643-5434toll-free 1-877-gehrig-1www.alsphiladelphia.org

Our mission is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

&This Issue We

thank saluteOUR SPONSORS

Buchanan ingersoll & rooney pccitizens Bank

dow chemical companyparx casino

Universal Supply company

SaVe the date for these UpcOMiNg eVeNtS 2/28 to 3/7/20134 on 4 for a cure Colonial Middle SchoolPlymouth Meeting, PA

3/14/2013hot chocolate Adventure Aquarium Camden, NJ

3/23/2013chilly chili for paula VFW PostWest Chester, PA

4/7/2013ak5k run/Walk to Benefit alS Tyler State ParkNewtown, PA

4/22/2013pennsylvania advocacy day Capitol RotundaHarrisburg, PA

4/27/2013team Scamuffa 5th annual car Show/chicken BBq Wagontown FirehouseCoatesville, PA

4/28/2013Joe Schwartz ‘83 Memorial 3k Walk/run Haverford CollegeHaverford, PA

5/4/2013crossFit for casey CrossFit StealthNew Brunswick, NJ

5/4/2013Bartone rugby Brandywine Rugby ClubWest Marlborough, PA

5/8-11/2013National alS advocacy day & public policy conference Washington, D.C.

5/11/2013Seaside Board…Walk to defeat alS® Hiering Avenue and the Boardwalk Seaside Heights, NJ

5/16/2013phillies phestival Citizens Bank Park Philadelphia, PA

5/18/2013Bloomsburg, Jorge’s Walk to defeat alS® Bloomsburg Town Park Bloomsburg, PA

6/1/2013hershey Walk to defeat alS® Campus of Penn State Milton S. HersheyMedical Center and Penn State College of MedicineHershey, PA

6/15/2013alS express Morey’s Piers Wildwood, NJ

6/19/2013armstrong golf Hershey’s Mill Golf ClubWest Chester, PA

7/6/20132nd annual ray Matthews alS Bike tour

9/14/2013rehoboth Walk to defeat alS® The Bandstand at the Boardwalk Rehoboth Beach, DE

9/21/2013Ocean city Board…Walk to defeat alS® 6th Street Athletic Complex Ocean City, NJ

FoR MoRE InFoRMaTIon on all oUR EVEnTs, VIsIT www.alspHIlaDElpHIa.orgFollow The als association Greater philadelphia Chapter on Facebook at www.Facebook.com/alsphiladelphia and on Twitter @alsphiladelphia

als philadelphia newsletter winter/spring 2013

Documents

defeat als

defeating als

als events

rehoboth beach walk

philadelphia phillies

board of trusteesjeffrey

board of directorschair

day of hope