SCILife, Vol. 4, No. 5

www.spinalcord.org

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

Vol. 4, No. 5September/October 2007

By Cheryl Stowe,SCILife Correspondent

Five presidential candidates have re-sponded to a questionnaire designed toinspire thoughtful responses from 2008

presidential candidates on major disabilityissues. The questionnaire was compiled bythe disability rights organizations ADAPT,the American Association for People withDisabilities (AAPD), the National Councilon Independent Living and Self AdvocatesBecoming Empowered. It was distributed toall of the declared candidates from the Dem-ocratic and Republican parties April 5 witha response deadline of May 31.

Senator Barack Obama (D-Ill.) was thefirst to respond on June 1. New MexicoGovernor Bill Richardson was the next toreply June 10, followed by former SenatorJohn Edwards and Senators Hillary Clinton(D-New York) and Christopher Dodd (D-Conn.) To date, only these five candidates(all Democrats) have responded. Here is asummary of their responses, in the orderthey were received.

BARACK OBAMAObama replied that his administration

would work to bring the employment rateamong people with disabilities as close aspossible to the rate of their peers who arenot living with disabilities, using the federalgovernment as a “model employer.” He saidhe would reduce employment barriersthrough providing proper support to work-ers with disabilities, increasing educationalopportunities, solving the health care crisisand strengthening civil rights laws.

He wrote that “delays in (SSI and SSDI)benefit determinations must be drasticallyreduced,” calling them “unconscionable.”

Obama wrote, “As president, I will signa universal health care plan into law by theend of my first term in office. I will mod-ernize the U.S. health care system to im-prove quality and reduce costs by $2,500 fora typical family…My plan will cover theuninsured and lower costs to families andbusinesses. I will allow people who do nothave access to group coverage through theiremployers or public programs (such as Med-icaid, SCHIP, and Medicare) to buy into anational pool, which will offer a new publicplan similar to the one I have as a memberof Congress.”

He supports change to the “home-bound” rule, saying, “Medicare policy mustreflect the common sense notion that com-munity engagement and support is a vital

component of a meaningful life.”On the issue of long-term services and

supports, Obama wrote, “I believe the fed-eral government must take a larger role intransitioning our long-term care systemfrom institutions to home and community-based settings.” He did not elaborate, but heis already a co-sponsor of the CommunityChoice Act (S. 799)

Obama also pledged to develop 14,000new affordable housing units in mixed, lowand middle-income neighborhoods.

BILL RICHARDSON Regarding employment barriers, Richardsonwrote “It is difficult to track employees with

disabilities because of the confidentialityclauses regarding employment, but I wouldestablish a method of determining howmany people with disabilities are employedand challenge business to increase that num-ber every year.” He did not elaborate.

He said he hopes to eliminate SSI andSSDI work disincentives, and “would en-courage people with disabilities to workrather than punishing them for doing so.”

Richardson did not elaborate on hishealth care plan, saying only that Americans“would have access to affordable, guaranteedcoverage.”

To address the shortage of accessible, Continued on page 14

By Gary Karp

Harley Thomas looked great in a tux. Hewas a “man’s man” who took pride indressing sharp, his hair always straight,

his body trim. Even his jeans had a crisp,ironed crease, matched to some perfectsuede or leather jacket. His face was hand-some and sharp featured in a way that onecan only imagine looked good throughevery stage of his 68 years.

Yet there was nothing intimidatingabout him, especially once you discoveredthe almost childlike joy he took in living. Hehad the capacity to joke around just as ablyas he asserted strong and intelligent leader-

ship. In either mode, he deliveredwith a wry smile and a ready ear.

A little thing like being para-lyzed would never stop a man of hisilk — barely slow him down, infact. He lived and worked hard —both in paid mode and during thetruly substantial number of volun-teer hours he happily offered up tothe disability community.

So we have lost not only atreasured and effective advocate,we’ve lost a real friend whobrought us delight multipliedmany times over compared to theinevitable moments of rolling oureyes when he got a little picky oversome detail, as was his wont.

So what? We always knew thathe cared, and no one could notwelcome the way Harley expressedhis passion. He wasn’t mainly con-cerned with whether he was right;

he cared about whether right was beingdone. That made him a great partner towork with — a man who listened well with-out being fixed in his positions. What a rarequality.

And what a life. Having grown up inUtah, Harley joined the Marine Corps soearly that he was discharged at the age of 19.After taking a little break to hitchhike acrossthe U.S. with a buck and a half in hispocket, repeating the trick by air and shipfrom Taiwan to Hawaii, military life clearlyappealed enough to draw him to the U.S.Navy for another 18 years. Doubtless, helooked great in his dress uniform.

Attached to the Defense Communica-tions Agency, Harley was stationed in Col-orado, Hawaii, Japan, Vietnam, San Diego,and Norfolk and Reston, Va with his handson the big daddies of computers in thosedays — air conditioned rooms filled withtall mainframe banks and gyrating ten inch

Continued on page 4

In Memoriam Harley Thomas

Candidates Speak Out on Disability Issues

Harley Thomas.

Barack Obama. Bill Richardson.

2 September/October 2007

By Jim Ward

On July 26, 2007, the 17th anniversaryof the signing of the landmark Ameri-cans with Disabilities Act (ADA), I had

the privilege of joining disability rights lead-ers and members of Congress alongsideNSCIA’s CEO, Marcie Roth, on the west

steps of the U.S.Capitol at the pressconference an-nouncing the in-troduction of theADA RestorationAct of 2007. Thisvital legislation ad-dresses the narrow-ing of the ADA inthe courts and will

restore civil rights protections for millionsof Americans with disabilities.

This day was particularly moving forme, as it came during ou r one-year, cross-country bus tour which promotes the his-tory of the disability rights movement,educates about the importance of peoplewith disabilities being involved in the judi-cial nominations process and calls on Con-gress to pass legislation to restore civil rightsprotections under the ADA.

The bus tour and traveling exhibit, en-titled The Road to Freedom: Keeping thePromise of the Americans with DisabilitiesAct, was inspired by Justin and YoshikoDart’s nationwide travels to promote pas-sage of the ADA in 1990. The tour includesan exhibit of Tom Olin’s moving photo-graphs of the struggle for disability rights,Arlene Mayerson’s narrative of the people’shistory leading to passage of the ADA and a24 panel tabletop disability timeline createdby Advocates Coming Together. Bus stopevents include public presentations by localand national disability leaders, policymak-ers, entertainers and advocates.

The Road to Freedom tour utilizes anarray of tools and activities including an at-tention-getting branded bus, the multimediaexhibits, press conferences, educational mate-rials, petitions and more. By Nov. 15 of thisyear, the Road to Freedom will have traveledto all 50 states with more than 90 scheduledbus stop events organized by state and localdisability organizations at the direction of ouradvance team at the Disability Rights Educa-tion and Defense Fund. One of our earlieststops was the NSCIA Summit and the SCIHall of Fame! To date, our bus stop eventshave included U.S. Senators and members ofCongress, governors, mayors, and other digni-taries. Many have issued proclamations insupport of the tour and ADA Restoration Act.

Our goals are threefold: 1. To educate America about the com-

pelling history of the disability civilrights movement, especially those activ-ities leading to passage of the ADA.

2. To educate America about how, despitethe people’s movement leading to pas-sage of the ADA, activist judges have

rolled back civil rights protections forpeople with disabilities.

3. To build coalitions and to mobilize Amer-icans to pass the ADA Restoration Actand to appoint judges who will respect theintent of Congress in passing the broadcivil rights protections of the ADA.

All around us there is evidence of ad-vances spurred by the ADA. Curb cuts, au-tomatic doors, accessible transit and morehave made for a better America. However,over the past eight years, the Supreme Courtand the lower courts have dramaticallychanged the meaning of disability under theADA so as to make it almost unrecognizable.Activist judges have ruled that people withepilepsy, diabetes, mental illness, intellectualand developmental disabilities, musculardystrophy and cancer (among many others)are not “disabled” for purposes of the ADA.In fact, people with disabilities lose morethan 97 percent of ADA employment dis-crimination claims because judges rule thatthey do not meet this new, overly narrowdefinition of disability.

Upon introduction of the ADA Restora-tion Act of 2007, Senator Tom Harkin (D-Iowa) explained, “These cases have created abizarre catch-22 where people with seriousconditions like epilepsy or diabetes could be

forced to choose between treating their con-ditions and forfeiting their protections underthe ADA, or not treating their conditionsand being protected. That is not what Con-gress intended when we passed this law 17years ago. This situation clearly cries out fora modest, reasonable legislative fix…”

The ADA Restoration Act will clarifythe definition of disability under the ADAand ensure that a person who uses “mitigat-ing measures” (such as medication forepilepsy or diabetes) will be protected underthe law. What the ADA Restoration Actdoes not do -- despite the declaration other-wise by the National Chamber of Com-merce, which has just come out inopposition to the bill – is expand or broadenADA civil rights protections.

As we tour this beautiful – and very large– country, we are calling on Americans to “geton the bus” for freedom, opportunity andequal access to the American dream. So go towww.roadtofreedom.org to learn more aboutour efforts, to see the tour in photos and tosign our petition calling on Congress to passand the president to sign into law the ADARestoration Act of 2007. Together we will helpAmerica keep the promise of the ADA.

Jim Ward is the founder and president ofADA Watch and the National Coalition forDisability Rights (NCDR). ADA Watch isa coalition of national disability, civil rights,and social justice organizations and NCDRis the alliance of state cross-disability organ-izations. "Road to Freedom" bus tour spon-sors include Independence First, AARP,AOL, Leonsis Foundation, Open SocietyInstitute and others.

3September/October 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 MuhaDEVELOPMENT DIRECTOR: Russell Mark WEB 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 © 2007

Get on the Bus for the ADA Restoration Act

guest editorial

Jim Ward .


By Marcie Roth,Executive Director and CEO, NSCIA

Iremember a conversation with HarleyThomas, when I was new to my role asNSCIA’s CEO. Harley and I had previ-

ously worked together in our public policyroles for several years, me at the NationalCouncil on Independent Living and Harley

at Paralyzed Vet-erans. He washelping me tounderstand theoften fractiousr e l a t i o n s h i p samong the SCIgroups. He waspointed in hisobservations andmade it clear that

he shared my concern that the history of an-imosity among and between some of thegroups was very harmful to our shared con-stituency.

I remember in that conversation that Itold him that I was committed to buildingbridges and that if he shared my commit-ment to be a part of the solution, NSCIAneeded his help. I asked if he’d be open tobeing nominated to our board. He was, andthe rest, as they say, is history.

Harley was my friend and we made astrong team in leading NSCIA. We didn’tagree on everything, and in fact, those whoknow us both may remember some (mostly)polite but heated exchanges. We both knew,and frequently acknowledged, that we wereboth so passionate about our beliefs that themix could be either volatile or high gradelubricant. Among his many other notablequalities, Harley was known for askingtough questions, saying things no onewanted to hear, drilling farther than one’s

comfort zone often dictates and his wordssometimes left a bit of a sting. If I thoughthe would be embarrassed to hear me saythis, I wouldn’t write it.

However, he was damn proud of this as-pect of his style and I am smiling as I writethis, picturing the smug look on his facewhen his methods had successfully pushedme and NSCIA to a better place. He was al-lowed to get away with this because he wasalso so good at “taking it” when he waswrong.

And, it is those complementary quali-ties that have contributed so much toNSCIA’s significant growth over the pastseveral years. Among his greatest accom-plishments was masterminding the hugelysuccessful Spinal Cord Injury Hall ofFame. Not only is it an important piece ofNSCIA’s contribution to maximizing thequality of life for our members and ourconstituents and an important opportu-nity to recognize the best of the best inspinal cord injury, it’s also a heck of a funnight and a great excuse to dress up. And,I don’t think I’ve ever seen a man wholooked more at home in a tuxedo thanHarley Thomas.

Harley first became ill in May and wewere all holding our breath all summer ashis health took him, and his longtime com-panion and new bride, disability commu-nity leader Nancy Starnes, for a wild ride.

Harley joins several other recent boardmembers in NSCIA’s celestial boardroom,including Steve Towle, Dianne Barry andRoyce Hamrick who all served during thesix years since I became CEO.

I miss Harley a lot, and I can’t imagineour next Annual Meeting on Nov. 5 or theNov. 6 Hall of Fame Gala without him. Ihope all who read my column will make apoint of joining us for these events so we canall enjoy some of the fruits of HarleyThomas’ lasting contribution to NSCIA.

Harley’s Passionfrom the executive director

BUSINESS ADVISORY COMMITTEE ROSTER

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Federated Department Stores

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Microsoft Corporation

Mitsubishi Electric America Foundation

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Craig H. Neilsen Foundation

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Quickie / Sunrise Medical

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Got a Story? Share it!"I know what it's like to face a life changing event like a spinal cord injury,

and how much the right support can mean to someone in those first few days and weeks after the injury. I've been truly blessed 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 and NSCIA are developing an interactive DVD to carry a message of hope and tangible support for people with new spinal cord injuries or disease.

If you’d like to share your story, or know someone else who might, visit www.spinalcord.org/mystory

Continued from page 1

tape reels. While in the service he earned his degree

in business from the University of Virginia.Chief Petty Officer Harley Thomas retiredin 1976 and then worked in the private sector as a systems analyst.

An avid motorcyclist and motocrossracer, Harley injured his spinal cord at T5in 1983 at the age of 43 during a ride acrossthe southwestern desert. He also had cervi-cal fractures, but squeaked through withneurological injuries limited to the thoraciclevel.

After he was injured, Harley devotedhimself to the disability community, co-founding Colorado Sports for the PhysicallyChallenged, a sports camp program forchildren and youth with disabilities, and asexecutive director of the Mountain StatesChapter of Paralyzed Veterans of America.

Having gained attention on the nationallevel, he was hired to Washington, D.C. byPVA as associate director for their Legisla-tion Program in 1997. He joined theNSCIA board in 2003 and became presi-dent of the NSCIA in 2005. He served aspresident until he became ill and steppedaside over the summer.

Prolific not only in work, but in family

as well, he leaves behind five children and agrand total of 23 grand- and great-grand-children. His devotion to family extendedback in time from his own huge brood. Agenealogy hobbyist, Harley traced his fam-ily back to 12th century England andWales. He was yet another patriot of solidBritish immigrant stock.

Harley had an eye for beauty, clearly sa-voring the role of judge for the 1986 MissWheelchair America Beauty Pageant. He,in fact, landed a beauty queen: MissWheelchair New Jersey, Nancy Starnes,now the chief of staff for the National Or-ganization on Disability. Nancy has it all,beauty and brains.

They married just this past February ona cruise, just one of many trips they tooktogether in their 10-year relationship, in-cluding international treks to the likes ofIreland and China.

Harley Thomas will be long remem-bered. He truly had an impact on so many,was a country gentleman extraordinairewith that sly grin, and he was just so, well,memorable.

We lost him to heart failure after a threemonth struggle to recover from a recent sur-gery, Nancy firmly at his side. Travel well,Harley.

In Memoriam...

It’s Hall of Fame Time! By Patrick Maher,Acting President, NSCIA

This is an exciting time of year for our or-ganization as we prepare for our 3rd an-nual Spinal Cord Injury (SCI) Hall of

Fame induction ceremony and gala at theKennedy Center on Tuesday, Nov. 6.

This year’s nomination process gener-ated more than150 strong candi-dates throughoutthe 14 categoriesand our emergingleader award andwe look forward toinducting a newclass of membersinto the SCI Hall

of Fame.We have worked hard to manage all of

the incoming nominations to ensure fair-ness and objectivity in the process and tomaintain the high standard which was es-tablished with our first two Hall of Fame(HOF) inductions.

Thanks to all who submitted nomineesto any of our HOF categories or for ourEmerging Leader award and to our mem-bers who voted for their top candidates in

each of those categories. Your active par-ticipation, both by completing the nomi-nation ballot and by joining us at the SCIHall of Fame Gala, continues to help as-sure the prestige of the honor now and infuture years.

Along with the induction ceremony, wewill be conducting several other key meet-ings and workshops in Washington, D.C.during Nov. 5, 6 and 7. These will includeextensive board of directors’ meetings witha focused agenda that supports our strate-gic plan as developed over the past 18months; the annual meeting (open to allmembers), with voting for any open direc-tors’ positions and our annual chaptersmeeting as well as a separate full-day chap-ter development workshop to be con-ducted by the NSCIA’s vice president forchapters, Deb Myers. We will also have ourBusiness Advisory Committee meetingconducted by its leadership including sen-ior board members David Boninger andTari Hartman Squire and an SCI LeadersGroup meeting led by NSCIA CEO Mar-cie Roth. Clearly these will be three critical,busy, tiring and – we fully expect – gratify-ing days in support of our mission to be akey organization assisting all persons whomanage spinal cord injury or disease to op-timize their health and opportunity for afulfilling, high-quality life.

To give you some insight on how keythese few days in November are toNSCIA, it’s important to recognize thatour board, staff and BAC are spreadthroughout the nation, conducting ourcollaborations throughout the year pre-

dominantly via email and teleconferenc-ing. In fact, when a new board, staff orBAC member joins the organization, thisonce or twice a year face-to-face oppor-tunity to meet, break bread, brainstorm,motivate and recharge may be the firsttime he or she will meet the rest of theteam in person. I’m confident that you’llrelate to how much stronger relation-ships can become once you’ve met thevoice on the other end of the phone oremail dialogue.

Some of the most gratifying momentsfor me have been meeting the exception-ally dedicated, bright and passionate staffduring these gatherings. While we areclearly a working board, the NSCIA staff istruly the heart and soul of the mission.Among other efforts, they manage thecontent on spinalcord.org; respond withinsight, heart, and support to all inquiriesthrough the resource center; support manyof the board’s committee initiatives andwork closely with senior management toassure that we’re in touch with the needsof our membership. In fact, when I havethese opportunities for some face-to-facetime with the staff, it strikes me how oftenI forget that they too only have limited op-portunities throughout the calendar yearto meet, socialize, strategize and enjoy oneanother’s company in person.

With so many daunting challenges fac-ing our nation – the wars in Iraq andAfghanistan, the volatility in our markets,lack of quality health care coverage or anyhealth care coverage for so many, uncer-tainty surrounding the future political

landscape and its impact on all of our lives,etc. - it’s no time for us to let our guarddown with respect to demanding that allof us living with a recognized disability,and those who help support our well-being, have our voices heard. We will bestrategizing (with actionable goals, I assureyou) to achieve just that within our mis-sion in early November in Washington,D.C. along with many of our established,and new partners with similar missions.We are confident that each of you will bedoing the same and thank you for yourdedication. Who knows, maybe we’ll meetin D.C.!

Remembering HarleyAlthough there’s nowhere in this messagethat is a comfortable place to present thefollowing, I think that on the heels of not-ing how much we all enjoy one another’scompany, NSCIA board and staff is asgood a point as any. Harley Thomas, ourimmediate past president of the board,longtime disability advocate, veteran andfriend, passed away recently. Harley is al-ready missed and our grief over his passingwill only grow. I know that I will person-ally miss his steady leadership, confidencein what he knew was right and profoundcommitment to supporting others withdisabilities toward a more fulfilling life. Iwill also miss, perhaps more, his quick andbright smile, keen mind and appreciationfor many of life’s small and genuine pleas-ures. He impacted more lives than I canknow and we are a stronger organizationfor Harley’s influence.


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EXPREAL PEOPLEREAL CHALLENGESREAL SOLUTIONS

from the president


NSCIA will celebrate 14 new inducteesand an emerging leader at the 3rd an-nual Spinal Cord Injury (SCI) Hall of

Fame gala and induction ceremony on theevening of Tuesday, Nov. 6, at the John F.Kennedy Center for the Performing Arts inWashington, D.C. in recognition of the ac-complishments of people with SCI andthose committed to their quality of life.

Once again, NSCIA will be host to aperformance on the Millennium Stage, fol-lowed by the 2007 induction ceremony anda dessert reception in the Roof TerraceRestaurant. Nashville based singer/song-writer JP Williams will perform on the Mil-lennium Stage, and award-winningjournalist, Leon Harris will emcee the event.

Hosted last year by inaugural SCI Hallof Fame member and former DatelineNBC correspondent John Hockenberry,this black tie optional celebration is at-tended by business professionals, govern-ment officials from a variety of departmentsincluding the U.S. Departments of Healthand Human Services, Labor, Justice, Edu-cation, Housing and Urban Developmentand the Social Security and Veterans Ad-ministrations, healthcare providers, mediarepresentatives, researchers, individuals, andfamilies – all of whom share a commitmentto maximizing the quality of life for peoplewith spinal cord injury and disease.

This year’s categories include AssistiveTechnology, Benefactor, Corporate Execu-tive, Disability Activist, Disability Educator,Entertainment, Entrepreneur, GovernmentExecutive, Grassroots Organizer, Legislative,Media, Research in Basic Science, Researchin Quality of Life, and Sports. In addition,NSCIA will award an “Emerging Leader,” aspecial award which was introduced last yearin conjunction with the 2006 SCI Hall ofFame.

The process began in August whenNSCIA called for nominations. Far exceed-ing last year’s nominations by almost 50stellar nominees, NSCIA has received morethan 165 qualified nominees! These nomi-nees were voted on by NSCIA membersand reviewed by a selection committee toratify the voting. One nominee from eachcategory will be inducted and celebrated atthe gala.

Formed by NSCIA in 2005, the SCIHall of Fame was created to celebrate andhonor individuals and organizations thathave made significant contributions to qual-ity of life and advancements toward a betterfuture for all individuals with spinal cord in-jury and disease.

To find out more about the SCI Hall ofFame or to see a list of previous inductees orthis year’s nominees, visit www.spinalcord.org.

Join Us at NSCIA’s 3rd Annual Spinal Cord Injury (SCI) Hall of Fame Gala

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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.

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

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° 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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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.

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By Santina Muha,SCILife Staff Writer

Peter Garcia has gone by the name Zensince 1992. When teaching martial arts,his students gave him the name based on

a reading they were assigned called “Zen inthe Martial Arts” by Joe Hyams. Garcia de-fines Zen as a state of mind meditation peo-ple enter in which they are in “complete focuswith the moment, without preoccupation ordistraction from past occurrences or futurepreoccupations.” His students felt Peter ex-emplified this. He published his first book,“Look Somewhere Different” in 1992 at age22 under the name “Zen Garcia,” and thename has stuck since.

Now, Garcia is using his focus and cre-ative energy establishing a media outlet forpeople with disabilities run by people withdisabilities. (www.Endeavorfreedom.TV)

According to the EndeavorFreedom.TVwebsite, people with disabilities make up atleast 20 percent of the population and yet dis-ability news, stories and events make up ap-proximately three percent of what thecorporate media covers. People who are fromminority groups and also have a disability arerepresented even less.

Garcia says EndeavorFreedom.TV wantsto change all that. “We want to capture andrelay the everyday stories of everyday strug-gles by everyday people with disabilities justtrying to manage the American dream herein the land of the free and the home of thebrave. It seemed to us that it would be an eas-ier task to create an independent media net-work than to convince corporate news outletsthat our issues are important, especially nowat a time when so many of our nation'syoungest and finest are returning from thetheater of war with lifelong and permanentdisabilities. We must encourage them withthe example of others and shift them fromthe reality of having to turn on the TV andfind nothing that reflects their everyday ex-perience or need for something they can re-late to in their struggle to cope. They needfilms, movies, documentaries and coverage toinspire their own healing and continued evo-lution. And what better time than right nowwhen so many incredible people are doing somany awesome things to foster positivechange into the disability world? Endeavor-Freedom.TV wants to be the platform for in-spiration for our returning veterans."

Garcia and friends were hitchhiking toSan Francisco in 1995 when they accepted aride in a vehicle that then crashed. He says,“I remember waking up day after day at theShepherd Center in Atlanta, after the van Iwas in lost its brakes on a California moun-tain road and we plunged 85 feet to theground, shattering my neck on impact.Dreams were my only reprieve at the time,ghosts of my former life.”

Garcia admits at first he was scared to livethe rest of his life as a C5 quadriplegic. “Beforemy injury I had the greatest life,” Garcia re-members. He spent his spring, summer andfall exploring America while following theGrateful Dead. “I had become disenchantedwith always being behind four walls or insidea vehicle where I felt I was separate from therest of creation. My first book is about escap-

ing the east coast, the big cities and thewhole 9 to 5 life. I wanted to dothings differently. I wanted to seeAmerica and all that it entailed. Iwanted to seek out God and discoveranswers to the larger questions of lifeand why we are all here.”

For four years, Garcia lived in avan, staying with friends he wouldmeet all over the country. “I was alonefor large amounts of time. I did nothave a cell phone or a beeper, or any-thing else that could distract me fromwhatever moment I was in. I had nocommitments and no place I neededto be. I decided every day accordingto what happened. It was the ultimatefreedom. Often I would spend months justliving in a national or state park, writingpoems of self-exploration.”

Winters were spent in Jackson Hole,Wyoming, snowboarding with friends andteaching martial arts. In 1994, Garcia at-tended the Heartwood Institute of HealingArts in northern California, where he learnedsuch practices as deep tissue massage, shiatsuand polarity.

“The years I spent living in a van studyingthe things that I was studying really groundedme into who I am now. I don't think I wouldhave ever been able to manage or handle mycurrent circumstances without what sobrietyall those years of exploration allotted me. Itwas that exploration that established my faithand spirituality. I am lucky to have had thechance and the opportunity to do all thethings that I did before acquiring my disabil-ity.”

After rehab, Garcia returned to his house,and due to its inaccessibility had to sleep in ahospital bed in his living room. “I would havemired myself in pity had my presence athome been that of a quiet individual suffer-ing. But it wasn't. Watching my aging par-ents' relationship self-destruct over dealingwith my disability made me force myself todo something.”

Shortly thereafter, Garcia applied for Op-tions Cottage, a six month long independentprogram at Warm Springs, Ga. “It was therethat I finished my second book, ‘When theEvening Dies.’ In the process, I found myselfagain.”

Determined not to add to the unrest athome, Garcia worked with Georgia Voca-tional Rehabilitation to find a way to a returnto Mercer University in Macon, Ga.

Garcia’s attitude has since changed fromfear to motivation. “There is a strange peaceto living with disability. Because it becomesfruitless to pursue movement or activities inone direction, other avenues present them-selves and rekindle inspiration and passionfor life differently. I am different. Disabilityaged me certainly, challenging my soul to alloblivion. No one will know and explanationcan't truly be given. There is difference ineach disability and there is not one individualalive that doesn't have some kind of weird-ness about themselves.”

Garcia says the birth of his son, JustinJames, was his proudest moment. “He is mygreatest joy and my greatest legacy of thisworld. Even though I feel like I will leave alasting legacy of work including books, po-etry, documentaries, movies and more, myson will impact this world, I hope, in an even

greater way than I have.”Garcia also enjoys writing poetry, and is a

columnist with the Populist Party of America.His articles can be found at www.populis-tamerica.com/zen_garcia. He gets his inspi-ration from civil and human rights activiststhroughout history. “Many say that one per-son cannot do much, but think what ourworld would be if there had never been Mar-tin Luther King Jr., Gandhi, or John F.Kennedy to change the course of our nationand our world. Where would we be now?Truly one person can make a huge impactand a significant difference in the world ifthat person just realizes his or her potential.”

He continues, “I don't see my disabilityas something that limits my life. It doesmake me go about things a little bit differ-ently, however the things that I can't do Ireplace with things that I can.”


“SCI NEWS AND VIEWS”: A COLLABORATIONOF NSCIA AND ENDEAVORFREEDOM.TV

EndeavorFreedom.TV is a network of people in-volved in or interested in disability media or enter-tainment. Anyone can join this online community bycreating a profile. Videos and interviews are postedand available for members to watch.

NSCIA first learned about EndeavorFreedom.TVwhen founder Peter “Zen” Garcia contacted NSCIACommunications Associate Santina Muha to ask if shewould be interested in collaboration. Since she al-ways wanted to work in front of a camera and hosther own show, she agreed. And NSCIA offered to sup-port the effort as a sponsor by covering Muha’s timeto produce the content which the two organizationsshare.

Garcia and Muha agreed to work on somethingthat would tie disability news topics together with in-teresting interviews with people who are living withdisabilities and making a positive impact on our com-munity. As a result “SCI News and Views” was born.

Six “webisodes” of the talk show have alreadybeen produced and can be viewed at www.Endeav-orfreedom.TV, Youtube.com and Current.TV. Muhahas interviewed many interesting people, includingNSCIA CEO and Executive Director Marcie Roth; hip-hop artist and stem cell activist Professir X; Jesse Bil-lauer, founder of Life Rolls On (LRO) and LROambassadors Patrick Ivison and Briana Walker.

Visit www.endeavorfreedom.tv to become amember and watch “SCI News and Views” and othervideos, or to learn more about EndeavorFreedom.TV.

Finding Zen within Disability Media Zen films, directs and produces manyof EndeavorFreeom.TV’s projects.


The recent cervical level spinal cord injury ofBuffalo Bills player Kevin Everett reminds usthat along with each new football season a

spinal cord injury can happen to anyone.Millions of Americans associate the end of

summer with the beginning of football. As theleaves turn colors, these people begin to wear thecolors of their favorite teams. Sports bars fill upon Sundays with cheering fans and stadiums arecovered with people doing “the wave.”

Football has been an all-American sport fordecades. Millions of tackles have been made. Itonly seems logical that eventually, someone’sgoing to get hurt. Every season, players are puton the injured list. Most players return to theirpositions after a little healing, but some playersreserve themselves a permanent spot on the in-jured list.

According to the Annual Survey of Foot-ball Injury Research by the National Center forCatastrophic Sport Injury Research, “Rulechanges for the 1976 football season whicheliminated the head as a primary and initialcontact area for blocking and tackling (sic) isof utmost importance. The original 1976 ruledefined spearing as ‘the intentional use of thehelmet (including the face mask) in an attemptto punish an opponent.’ In the new 2005 def-inition in the rules ‘intentional’ has beendropped. The new rule says ‘spearing is the useof the helmet (including the face mask) in anattempt to punish an opponent.’ A 2006 pointof emphasis covers illegal helmet contact and

defines spearing, face tackling, and butt block-ing. Coaches who are teaching helmet or faceto the numbers tackling and blocking are notonly breaking the football rules, but are placingtheir players at risk for permanent paralysis ordeath. This type of tackling and blocking tech-nique was the direct cause of 36 football fatal-ities and 30 permanent paralysis injuries in1968. In addition, if a catastrophic football in-jury case goes to a court of law, there is no de-fense for using this type of tackling or blockingtechnique. Since 1960 most of the direct fa-talities have been caused by head and neck in-juries, and in fact since 1990 all but three ofthe direct deaths have been brain injuries.”

At the same time we are reminded of thedevastation that can come with spinal cord in-jury, however, we are also best served to look atthe valuable contributions made by high profileNFL players after there injury, and to under-stand the support and resources that can helpmake that possibility a reality.

Darryl Stingley was a wide receiver for theNew England Patriots from 1973 to 1977. Hisprofessional career as an athlete was cut short onAug. 12, 1978 during a pre-season game againstthe Oakland Raiders. Mid-leap, Stingley wastackled head on by Raiders’ defensive back JackTatum. His fourth and fifth vertebrae were in-jured severely, and Stingley lived the rest of hislife with quadriplegia.

Some might assume this marked the end ofStingley’s football career. They would be wrong.Stingley served as executive director of playerpersonnel for the Patriots. Stingley kept footballin his personal life as well, as one of his threesons played defensive back for the Arena Foot-ball League’s Albany Firebirds. Stingley died onApril 5 of this year at age 55. The cause of hisdeath was unclear, but attributed to heart diseaseand pneumonia which was reported to be com-plicated by his quadriplegia.

Mike Utley is another player injured by thesport. On Nov. 17, 1991 the Detroit Lions’ of-fensive guard was injured towards the very end

of a game against the Los Angeles Rams. Frac-turing his 6th and 7th cervical vertebrae in hisspine, Utley was paralyzed.

Like Stingley, Utley remains positive post in-jury about life and the sport of football. Withthe help of his agent Bruce Allen, Utley foundedthe Mike Utley Foundation. The foundation isdedicated to finding a cure for SCI. Utley leftthe field on the day of his injury giving thecrowd a “Thumbs Up.” That remains the sym-bol of the Mike Utley Foundation.

Spinal injuries do not always end up in para-plegia or quadriplegia. While playing runningback for the Kansas City Chiefs in 2005, PriestHolmes suffered an injury to his spinal columnwhen tackled by Shawne Merriman of the SanDiego Chargers. Holmes recovery is going well,and he even plans to return to the game some-time after the 2007 season.

Similarly, David Pollack, linebacker for theCincinnati Bengals, had a close call. Pollack suf-fered a neck injury while tackling ReubenDroughns of the Cleveland Browns in Septem-ber of 2006. In early 2007, Pollack underwentsurgery on a C6 fractured vertebra. Pollack isstill in the recovery process, and it is yet undeter-mined whether or not he will return to football.Currently, he will not be playing for the 2007season. Fortunately, though, Pollack has noparalysis at all.

Some may see these professional footballplayers as lucky to have ever played the game.Others view football as their demise. Howeverthere is an ongoing pattern of continued supportof football from players who were injured duringthe sport.

Spinal cord injuries happen on every levelof organized football. According to ChrisCanales, a young athlete who was injured dur-ing a high school football game, “It is not adangerous sport. It is a collision sport. Whatyou learn from the sport helps you get throughthe injury. You learn from your coaches andyour experiences in football to have a ‘neverquit’ attitude.”


Are You Ready for Some Football?

GRIDIRON HEROES OFFERS HELP AND HOPEFOR THOSE INJURED PLAYING FOOTBALL

Chris Canales was injured during a high school football gameon Nov. 2, 2001 while playing defensive back for San MarcosBaptist Academy. Sustaining a spinal cord injury, he now lives asa quadriplegic.

Coincidentally, on the first anniversary of his injury, Chrisand his father, Eddie, attended a football game in San Antoniowhere they witnessed another spinal cord injury on the field. Eddieremembers, “Chris turned to me and said, ‘Dad, we have to helpthem. I know what he is going to go through, and you know whatthe family is going to go through.’” This was the beginning of theGridiron Heroes Spinal Cord Injury Foundation. Formed in 2003by Chris and Eddie, along with former coach Mike Kipp, the mis-sion of the Gridiron Heroes is “to provide immediate, as well aslong term, resources and support to individuals sustaining cata-strophic spinal cord injury through activities associated with highschool football.”

The foundation currently works with 14 families. GridironHeroes provides monetary support, as well as the occasional do-nation to a family of equipment, such as the donation of two mod-ified vans last year.

They also provide emotional support for the athletes. Forthese 14 players, their futures were bright. Many of them hopedto go on to play professional football and never considered suchcatastrophic injuries. Eddie says, “After these guys graduate fromhigh school, they are forgotten by the football community. If theywent on to professional ball, this would certainly not be the case.”The Gridiron Heroes Foundation is doing its part to make sure theseyoung men live their lives to the fullest and are never forgotten.

In Texas, the Gridiron Heroes are the guys to call in the caseof a football injury. Eddie notes, “Now that we’ve begun to estab-lish our name, we get a call within hours of a football injury.”The foundation is based in Texas, although the Canales’ are hop-ing to eventually open chapters across the U.S.

The organization also focuses on prevention of injury. Chrisand Eddie travel the country to attend coaching clinics and empha-size the education of proper play. They recently did a presentationto reach coaches nationwide by introducing the ‘Heads Up’ videoput out by the National Athletic Trainers Association. Eddie andChris want coaches to know how much influence they have overtheir athletes, even post-injury.

High school injuries have recently entered into pop culturewith the premiere of NBC’s Friday Night Lights, an expansion ofthe hit feature film by the same name. The show focuses on aTexas football team, and in the first episode, Jason Street, one ofthe star players, sustains a spinal cord injury and continues hislife as a quadriplegic. Sound familiar? The beginning stages ofStreet’s journey on the program are loosely based on ChrisCanales’ story. Chris and his father have formed a close relation-ship with the show’s executive producer Peter Berg, who alsowrote and directed the pilot. They have visited the set of both themovie and the television show and plan to continue these visits.

With the inclusion of football injuries in pop culture, along withthe slowly, but surely, growing list of professional football playersthat have made headlines when injured in the game, and the grow-ing emphasis on players injured before they make it pro, one canhope SCI awareness in football will contribute to less injuries.

Over the years, the rules of football have changed, theequipment and safety gear has improved, and the circumstanceshave become safer.

But Chris still maintains,”Football is not a dangerous sport.It is a collision sport. What you learn from the sport helps you getthrough the injury. You learn from your coaches and your expe-riences in football to have a ‘never quit’ attitude.”

Still, the players continue to get bigger and faster. It is safeto say as long as football remains a “collision sport” there will beinjuries. That knowledge does not seem to deter many athletesfrom participating. Chris remembers, “Before my injury, I didn’teven really know what spinal cord injury was. When you’re outthere you don’t think about getting hurt. When it’s game time,your adrenaline is pumping and all you can think about is thatgame.”

CONTACT INFORMATION:Gridiron Heroes, P.O. Box 575, Schertz, TX 78154, Phone:210-849-9250, Website: gridironheroes.org

By Santina MuhaSCILife Staff Writer

Marc Buoniconti was injured in 1985 whilemaking a tackle during a college footballgame at age 19. Son of NFL Hall of

Famer Nick Buoniconti, Marc’s football careerwas cut short when he dislocated his C3 and C4vertebrae, injuring his spinal cord and resultingin quadriplegia. He now serves as ambassadorfor the Miami Project to Cure Paralysis and isPresident of the Buoniconti Fund to Cure Paral-ysis. Our communication associate, SantinaMuha, recently sat down with Buoniconti foran interview.

Santina Muha: Before your injury, wereyou looking forward to playing pro footballafter college?

Marc Buoniconti: My father was a line-backer for the Miami Dolphins. So obviouslygrowing up with him as my father, I loved thegame of football and I played it as a young boy.Then, I was fortunate enough to play in highschool and get a scholarship to college, and I al-ways wanted to try and follow in his footsteps.

SM: How was the psychological aspect ofyour recovery?

MB: I went through an emotional change,having to deal with what it’s like to live life par-

alyzed, and in a wheelchair.Obviously it was a big adjust-ment for me and my family,like everybody else, and it’sonly because of my family andthe support that I had from the

community that I was able to recover and startliving a different life.

SM: Back when the injury happened,what were your worst fears?

MB: Living, surviving. I was fighting for mylife. I was so close to death so many times thatjust surviving was very difficult. Of course you’rescared. You’re helpless and you’re just trying toget through the first hours, and then days, andthen weeks. I was also using a ventilator at thetime. I couldn’t breathe, I couldn’t talk, I couldn’teat. Just trying to learn to breathe again and getthrough rehab was my number one goal.

SM: When did you begin to feel hope? MB: I was able to get off the ventilator and

that had a huge impact on my life. It really al-lowed me to become more independent and getto rehab. When my doctor, Dr. Barth Green,came to talk to my family and me about hisdream, his vision of the Miami Project, to createa center solely dedicated to finding a cure, thatreally gave us the motivation to start the project.It really gave me my meaning for life, and that’sto try to make medical history and find a cure.Having the ability to do that gave me a lot ofhope. It gave everyone else hope, so that reallyadded meaning to my life.

SM: You have the image of someone whohas focused all his energy on treatment andcure and not at all on quality of life issues. Isthis accurate?

MB: Actually, the Miami Project addressesall of the issues. Eighty percent of what we do isbasic research and a search for a cure. About 20percent of what we do is quality of life research.We do a lot of clinical work with patients to im-prove their lives in many different areas includ-ing rehabilitation, as well as exercise and soforth. We do a lot of different things - qualityof life, education and research.

SM: I see you have a lot of different eventsplanned all over the country.

MB: We’ve created the Buoniconti Fund toCure Paralysis, which is a nonprofit organiza-tion, solely to raise money for the Miami Proj-ect, and we have a network of chapters, about30 chapters across the country, and they raisemoney in different cities all over the country.

Continued on page 10

Living a Different Life after Football An Interview with Marc Buoniconti

Marc Buoniconti.


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Living a Different Life ...Continued from page 8We receive about 40 percent of our money fromthe National Institutes of Health and other grantsources, and then the rest comes from privatedonations. So we do get a lot of support fromthe government. Fundraising represents morethan 50 percent of what we do.

SM: How has life improved for you andothers with your level of injury or greater be-cause of the Miami Project?

MB: I’ve been able to take advantage, ashave some of the other research subjects, of all ofthe cutting edge clinical resources that we haveat the project. Obviously I’m staying in the bestshape possible to be able to take advantage of acure and I’m being involved in a lot of clinicaltrials there with some of the clinical programsthat we have. And again, just the emotional ben-efit of being involved with an organization likethe project that’s dedicated to helping so manypeople in wheelchairs.

SM: What is your idea of a cure? Do youmean full return of all bodily functions to preinjury levels or something less?

MB: Our objective is to give people more in-dependence and a more functional life than wehave. If we can improve function and sensationand bodily function for people with spinal cordinjuries and make their lives more independent,that’s our goal. I’ve always said, I may never runlike I did before, I may never have 100 percentfunction like I’ve had before, but there’s nothingwrong with having that type of lofty goal. Ourgoal is to get people back to where they were be-fore. In the meantime, before we get to that goalof 100 percent return, we’ll do the best we canand get people back to being as independent asthey can be. If we can make people’s lives easierby allowing them to have more independencedue to their return of function, then I think that’sthe goal we’re trying to achieve.

SM: I recently read about a gift from Glo-ria Estefan to the Miami Project. Can you tellme about that?

MB: Gloria, along with several other people,launched our clinical trials initiative, whichmeans that we’re raising money separate fromour current budget to fund the cost of clinicaltrials. Gloria and Emilio Estefan donated $1million to kick that off, and we’ve already raisedup to $8 million of our $10 million commit-ment. We should be able to finish the clinicaltrials fundraising by the end of the year.

SM: What are you most vivid memoriesof your father's football days?

MB: When the Dolphins won the SuperBowl that was a very special time in my life.When my dad got inducted into the Hall ofFame I had the pleasure of introducing him intothe Hall of Fame and making that speech wasone of the high points of my life.

SM: Are you still a football fan?MB: Oh yeah, I watch more football now

than ever. I’m a big fan of the Dolphins and theUniversity of Miami Hurricanes.

SM: What do you do besides work for theMiami Project?

MB: That’s it. I dedicate my life to the proj-ect. I’m a volunteer and believe me, everyday Iwake up and try to find a cure. And I’m also in-volved here locally and try to do whatever I canto help the community.

SM: What do you do for fun? Or to relax?MB: I travel a lot and I enjoy my quiet time.

I like to get out and enjoy south Florida andMiami and just enjoy life.

SM: Is there one message you are trying toget out to the SCI community?

MB: The message is that we’re workingeveryday to find a cure. Rest assured that weknow what our job is, and that’s to find a cure.And people should be involved in research asmuch as they can.


ARE

THE

MOVING

PART

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Fairborn, Ohio 45324 USA

(937) 879-0734 • (937) 879-5211 fax

www.ERGYS.com • [email protected]

The ERGYS for home and clinical use is a prescribed device for C- and T-level SCI and other neurological conditions.

ERGYS®, “You are the moving part,” and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc.

©2005 Therapeutic Alliances Inc.

THE POWER OF YOUR MUSCLES

YOU{We like to think that the ERGYS is one of the all-time great marriages of man and machine. Take an incredibly clever engineering design and combine it with a motivated rider and you get one intense workout. And with five computers operating in perfect harmony, there’s only one thing missing:

NeuroEDUCATORNeuromuscular therapy to return or

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ERGYSState-of-the-art functional electrical stimulation (FES) ergometry to give

those with SCI the healthful benefits of using their leg muscles again.

Parastep by SigmedicsNeuromuscular electrical stimulation (NMES)

providing the potential for the spinal cord

injured patient to stand and ambulate.

SpectraSTIM Four channels of powerful, portable electrical stimulation to retain muscle

mass and improve overall health. A great complement to the ERGYS.

Therapeutic Alliances Inc.

333 North Broad Street

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ERGYS®, REGYS, SpectraSTIM The Power of Your Muscles are trademarks of Therapeutic Alliances Inc.Parastep

®, NeuroEDUCATOR®, and ® is a trademark of Sigmedics Inc. ©2005 Therapeutic Alliances Inc.

The Products of

Therapeutic Alliances



By Len Zandrow,NSCIA General Counsel

Persons with disabilities are eligible for avariety of benefits administered by theSocial Security Administration. Two

major benefits are Social Security DisabilityInsurance (SSDI) and Supplemental Secu-

rity Income(SSI). SSDI isfunded by thetaxes paid byworkers, em-ployers andthe self em-ployed and isbased on ana p p l i c a n t ’swork historyand earnings.SSI benefits

are financed through general tax revenueand are paid to people with disabilities whodo not have much income or property.

Individuals should apply for Social Se-

curity benefits as soon as possible after theybecome disabled. There are built-in waitingperiods for both SSDI and SSI. For exam-ple, SSDI benefits may typically not beginuntil the sixth full month of disability.

The claims process for disability benefitsis usually longer than for most other govern-ment benefits, although advocates are work-ing to reduce this disparity. You can helpshorten the process by including with yourapplication certain key information estab-lishing your identity and medical condition.This key information includes your social

security number; birth certificate; militarydischarge papers, if applicable; your spouse’ssocial security number and birth certificate,if you are applying for spousal benefits; yourchildren’s social security number(s) andbirth certificate(s), if you are applying forchildren’s benefits; checking and/or savingsaccount information, to arrange direct de-posit banking; names and contact informa-tion of all your health care providers; namesand contact information of your employersfor the last 15 years and recent W2 state-ments and income tax returns, if you have

been self-employed. You should also includethe dates of any prior marriages, if applica-ble, should your spouse be applying for ben-efits.

All documents that you provide shouldbe either originals or copies certified by theissuing entity. Because of the time frame in-volved in qualifying for benefits, you shouldnot delay filing your application if you donot have all of the necessary paperworkhandy.

If you are filing for SSI benefits, youneed to establish your financial needthrough additional evidence, includingmortgage or lease information on your resi-dence; payroll data, if applicable; bankrecords; insurance policies and car registra-tion(s).

In determining eligibility, the Social Se-curity Administration will evaluate whetheryou are working and earning too much toqualify. Those earning more than $900 amonth in 2007 generally do not qualify.Evaluators will also determine if your dis-ability is found on a designated list of dis-abling conditions. SCI is automaticallyconsidered a disability. Your disability mustalso interfere with your ability to do thework you previously performed and withyour ability to do any other type of work.

If the agency awards SSDI or SSI bene-fits, it may also send you a “ticket” to obtain

optional employment-related services. En-acted in 2001, Ticket to Work is a purelyvoluntary program designed to provide vo-cational rehabilitation, training, job referralsand other ongoing support. This program isopen to recipients of disability benefits aged18 to 65 in all 50 states.

A ticket is an actual document thatshows the government’s promise to pay anemployment network for employmentcounseling and services. The employmentnetwork can be either a private organizationor a public agency. The network agency hasthe right to select whom it will serve basedon both its assessments of the needs of theperson involved and its ability to help thisbeneficiary achieve his or her employmentgoals. The beneficiary receives employmentservices free of charge.

The Ticket to Work program also offers par-ticipants work incentives. These incentivesmay include the ability to keep cash benefitsand medical coverage while transitioninginto the work place. Specific details and re-quirements are beyond the scope of this arti-cle, but may be obtained from the program’sOperations Support Manager at 1-866-968-7842 http://www.yourtickettowork.com/program_info* See “Working and Earning” below for animportant exception.

Disability Benefits under the Social Securityand Ticket to Work Programs

By Mike Ervin, SCILife Senior Editor

Laura Hershey of Denver, Colo., can earnnearly $80,000 a year without losing el-igibility for Medicaid. That’s because she

has the smarts and the fortitude it takes totake advantage of an obscure provision theSocial Security rules that enables peoplewith disabilities, like Hershey, who want towork but can’t survive without Medicaidsupport to sidestep the poverty vortex.

Hershey’s disability is muscular dystro-phy. She is 45 and drives a sip-and-puff mo-torized wheelchair with a ventilatormounted on the back. She uses the ventabout 20 hours a day. In 1990 she quit herjob working at a center for independent liv-ing because the 9 to 5 life became too phys-ically taxing. But, as she writes on herwebsite, cripcommentary.com, “I knew Istill had talent and energy to give, and Iwanted to work somehow. I figured therehad to be a way for me -- a person with agood educational background, a lot of ideas,and a significant physical disability -- tocontribute something to the world, and toearn a decent living in the process.”

But will and motivation were notenough. She lives independently in thehouse she owns with her longtime partner,Robin, but only with about 16 hours ofdaily help from paid personal assistants.And of course there was no way she wouldbe able to earn enough to pay for that helpfrom her own pocket. But Medicaid is sucha poverty-based program that she couldearn almost nothing without losing the

Medicaid dollars that pay the wages of herassistants.

Hershey remembered hearing someoneat her former job speak vaguely of a Medi-caid program called 1619(b). She researchedand researched and learned that this provi-sion of the Social Security Act allows Med-icaid recipients to earn money fromemployment without losing eligibility.

“If I hadn’t worked at a center for inde-pendent living I never would have heardabout it. Nobody at Social Security knew about it.” Case workers would tell her therewas no such program, but Hershey’s re-search told her they were wrong. She con-tinued to question case workers and theirsupervisors until she found people who

knew about 1619(b) and were willing andable to help her sign up.

Still, Hershey says, it took seven years ofappealing denials and blasting through bu-reaucratic stonewalls before she finally offi-cially qualified for coverage under 1619(b).

“It’s not for the faint of heart,” Hersheysays.

There are still serious restrictions associ-ated with 1619(b). The harshest is that toqualify one must have been eligible forMedicaid for at least one month. Thismakes it very difficult for people with assetsto avoid impoverishing themselves to reachthe Medicaid asset limit of $2,000 for an in-dividual and $3,000 for a family.

Also, those utilizing the 1619(b) aresubject to the same asset limit. Hershey saysshe’s fortunate that she owns a house, whichis an exempt asset. If she has a large expense,she takes out a home equity loan. Nonethe-less, she still says the asset limit is unfair be-cause it prevents her from saving for thefuture.

Another restriction is the limits on howmuch one can earn under 1619(b). Thethresholds differ in each state and varywidely from $22,052 in Alabama to$49,517 in Alaska. The earning limit inColorado is $30,397. But Hershey can earnwell beyond that by exercising her right tonegotiate an individual threshold. She doesthis by adding the amount Medicaid spentsupporting her the previous year to the statemaximum. Since Medicaid usually spendsquite a bit paying her assistants and coveringother Medical and equipment costs, her in-dividual limit inflates to about $80,000.

So life is pretty good these days for Her-shey. She can relax a little and build her ca-reer as a disability consultant and freelancewriter. Robin works as a disability rights at-torney. She is also a wheelchair user and is

signed up for 1619(b) as well.Hershey writes, “I can work hard, and

accept jobs when offered. I'll no longer haveto turn down article assignments, or requestartificially low speaking fees for fear of be-coming ineligible for the benefits that paymy attendants.”

Information about 1619(b) is available on thewebsite of the Social Security Administrationat ssa.gov/disabilityresearch/wi/1619b.htm

Working and Earning without Losing Medicaid

Laura Hershey.

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Continued from page 1affordable housing, Richardson said he sup-ports increased funding for the Departmentof Housing and Urban Development to cre-ate more Section 811 housing for peoplewith disabilities.

As for long-term services and supports,Richardson wrote, “I fully support the rightof people to live in their community ratherthan institutions, if that is theirchoice…New Mexico ranks in the top threestates for having more people with long termneeds live in community-based settingsrather than in institutions.” But he stoppedshort of endorsing the Community ChoiceAct or the CLASS Act, the two major billsin the current Congress designed to addressthis issue.

JOHN EDWARDS Edwards said he would reduce barriers toemployment through education, independ-ent living, providing accessible transporta-tion and reducing stereotypes andmisconceptions.

Several times he promised to enforce theOlmstead decision, a 1999 Supreme Courtruling which upheld the right of people withdisabilities to live in their own communities,rather than in institutions.

Edwards called the Medicare home-bound rule “perverse.” He wrote, “I will pro-mote community-based care by fixing theseunfair, outdated and bureaucratic rules thatprevent Medicare beneficiaries from gettingthe things they need to live at home, such aswheelchairs.”

Edwards said he would ensure that atleast 5,000 new Section 8 housing vouchersover the next five years will be dedicated topeople with disabilities. He would requirelocal housing authorities to publish a list ofaccessible units and laments multi-year wait-ing lists as a barrier to Olmstead compliance.

Under his universal health care plan, Ed-wards wrote, “businesses will either covertheir employees or help pay their premiums.The government will make insurance afford-able through new tax credits and by leadingthe way toward more cost-effective care. NewHealth Care Markets will give families andbusinesses purchasing power and a choice ofquality plans, including one public planbased on Medicare. Finally, once these stepshave been taken, all American residents will

be required to take responsibility and get in-surance.” He added that “insurance compa-nies will not be allowed to discriminateagainst people with preexisting conditions ordisabilities.”

Edwards stated a strong commitment toproviding accessible transportation for peo-ple with disabilities beyond the basics ofwheelchair lifts on city busses. “Things thatsound little can be very important to ensur-ing accessibility. Clearing snow, removingstanding water, providing shelter from windand rain can make the difference between abus or train stop that is accessible and onethat is not.” He pledged to use the federalgovernment’s power through Section 504 ofthe Rehabilitation Act to achieve these goals.

As for long-term services and supports,Edwards wrote, “’I believe strongly in givingpeople with disabilities the choice of care intheir communities. I cosponsored the pred-ecessor to the Community Choice Act whenI was in the Senate to offer personal atten-dant services though Medicaid. The Com-munity Choice Act will help states complywith their Olmstead responsibilities.”

HILLARY CLINTONClinton wrote about her past political suc-cesses and the advancement of disabilityrights under her husband's administration,such as the Work Incentives ImprovementAct, which created the Ticket to Work pro-gram. But her responses to the questionnairegive very few concrete examples of the goalsof a prospective Clinton administration.

In fact, Clinton is the only candidatewho failed to declare her support for the cre-ation and appointment of a permanent assis-tant to the president for disability policy,saying only that she has “not made any com-mitments about how (she) would organizethe White House at this level.”

She promised to work with disability ad-vocates in creating and implementing herhealth care plan, stating, “We need to de-velop the best approaches to delivering qual-ity, cost effective care that meets the needs ofindividuals instead of continuing with theantiquated policy approach of today that ap-plies a one size fits all model.”

She wrote that she will continue to sup-port the right to home and community-based coverage for “a far more rationalAmerican long term care policy,” and thatshe “strongly support(s)” the CommunityChoice Act of 2007.

However, when asked how she will ad-

dress the inequities caused by the Medicarehomebound rule, which restricts coverage ofmobility devices to only those needed for in-home activities, she responded simply thatthe rule is imposed in a “far too restrictivemanner” and that she supports a “fair mod-ification.”

CHRISTOPHER DODD Dodd wrote, “I am an original cosponsor ofthe Community Choice Act and will supportthe CLASS Act...Taken together, these twoimportant pieces of legislation will providecritical services to individuals with disabili-ties.” He added, “My Administration wouldsupport creation of additional community-based options for individuals with disabilitieswhile at the same time working to ensurethat individuals choosing to live in these set-tings have the same access to Medicaid asthose living in institutions.”

Dodd said he will work to create a“health insurance marketplace based on, andparallel to, the Federal Employees HealthBenefit Plan.” He said no one will be forcedto participate in his plan. Those who do willpay premiums based on their ability to pay.

To create more affordable accessiblehousing, Dodd wrote, “I believe we can in-

crease housing opportunities for people withdisabilities by including requirements for acertain number of accessible housing optionsin all new affordable housing projects and arequirement that we retrofit older buildingsand developments.”

To address the staggering unemploymentrate among Americans with disabilities,Dodd said he supports more vigorous en-forcement of federal laws prohibiting disabil-ity-based employment discrimination. Healso said he would, “support efforts to in-crease the development of and access to assis-tive and universally designed technologies,and significantly expand efforts to ensurethat federal jobs are fully accessible to all.”And finally, he would “work to revamp thecurrent SSDI and SSI programs so that cur-rent recipients are not punished for whatwork they are capable of. Individuals thatleave SSDI and SSI for full-time employ-ment will have access to high-quality univer-sal health care.”

On a related note, Dodd was first to ac-cept an invitation to participate in a Novem-ber 2 national forum on equality,opportunity and access in New Hampshire,cohosted by NSCIA, Granite State Inde-pendent Living and several other advocacyorganizations (see separate story).

The failure of all Republican candidatesto respond sends a negative message to thedisability community. Responses are stillbeing accepted, however, and sponsors of theprocess still hope to learn more about the Re-publican agenda. Said Anne Sommers,AAPD’s policy counsel, “We hope that evenmore candidates will respond and we en-courage anyone interested in disability rightsto contact the campaigns to urge them to doso.”

The complete text of responses, includ-ing a side-by-side comparison and links to allcandidate websites, can be found at theAAPD website at www.aapd-dc.org.

Cheryl Stowe is a member of the NSCIA com-munications committee. She is a freelancewriter and speaker and lives near Nashville,Tennessee.

Candidates Speak Out ...

PRESIDENTIAL CANDIDATE FORUM ON QUALITY, OPPORTUNITY AND ACCESS

NSCIA, Granite State Independent Living and several other advocacy organiza-tions will co-host a national forum on equality, opportunity and access, Friday Nov.2, 2007, from 8:30 a.m. – 4:00 p.m. in the Radisson Hotel Ballroom Center of NH,700 Elm Street, Manchester, N.H.

Additional co-hosts include NH Developmental Disabilities, Council, NH Disabil-ities Rights Center, NH Institute on Disability, NH Spinal Cord Injury Association,and People First of New Hampshire. The event is sponsored by AARP, ADAPT, Amer-ican Association of People with Disabilities, American Foundation for the Blind, theArc of the United States, Association of University Centers on Disabilities, DisabilityRights Education and Defense Fund, Epilepsy Foundation; National Coalition of Men-tal Health Consumer/Survivor Organizations; National Council on Independent Liv-ing, National Spinal Cord Injury Association, New England Chapter ParalyzedVeterans of America, Self Advocates Becoming Empowered, United Cerebral Palsy,United Spinal Association and VSA Arts. Granite State Independent Living advocatesfor the rights of people with disabilities in New Hampshire and across the nation.

For more information visit www.gsil.org or call (603) 228-9680 or 800 826-3700 or 888 396-3459 (TTY).

John Edwards.

Hillary Clinton with SCI Hall of Fame nomineeRichard Gaskin in Washington, D.C. in 2006.

Christopher Dodd.

Wheels2WaterBy Joe Testaverde

On July 4, 2000, I broke my neck in adiving accident, resulting in C6/7quadriplegia. Before my accident, I was

an avid surfer. It was the greatest experienceof my life as a teenager, so I felt surfing againwas the one thing that would free me fromthe mental hurdles I faced after becomingparalyzed.

Wheels2Water (W2W) is a non-profitorganization that started in California byTravis Tremble. I heard about these surfingevents back in 2003 and flew right out toLos Angeles to surf. After my experience inCalifornia I decided to organize an "EastSide" W2W, which has been successfullyrunning for three years.

Even though I am not standing when Isurf these days, I still get the same rush Iused to. Being in the water is a great feelingfor anyone, whether you have a disability ornot, and surfing is just one way to get a rushfrom being in the water. I think it is espe-cially great for a person with a disability be-cause as someone who has sustained a spinal

cord injury, I feel I am more limited to whatI can do and what I have access to.

A little assistive technology makes surf-ing possible for people with SCI. We hadhandles and grips installed on the surfboardsto help the surfer make turns, and we uselife vests so we float!

If you can lie on your stomach with yourelbows holding you up, or sit in a chair, thenyou can surf.

CONTACT INFORMATION

Wheels2Water818 Geneva Ave #AHuntington Beach, CA92648www.wheels2water.org

Joe Testaverde Long Island Spinal Cord Injury ResourceCenter 3445 Edgerton Avenue, Wantagh, [email protected].

Life Goes On/ They Will Surf Again400 Corporate Pointe, Suite 300 Los Angeles, CA 90230866-939-4559 www.liferollson.org/twsa


They Will Surf Again By Christiaan Bailey

While some adaptive sports have en-joyed a relatively long and successfulhistory of adaptive techniques and de-

signs, adaptive surfing is still in its grassrootsphase and much of the equipment used isstill in early stages of refinement.

I live in Santa Cruz, California and I’man ambassador for the Life Rolls On Foun-dation. I'm a L3-L4 (incomplete) paraplegicand a former professional surfer/skate-boarder. Shortly after my accident in June2006, my friends and I set out on a missionto change the way in which adaptive surf-boards are designed. This road has been along one to say the least and little did weknow at the time just how big an undertak-ing we were about to embark on.

There are a few questions you shouldask yourself when selecting a surfboard forthe adaptive version of the sport: Howoften do I plan on going out? On average,how big are the waves I will be riding?What kind of break will I most likely besurfing when I do go out (i.e. beach break,point break, sea mount etc.)? What is mylevel of injury and what muscle groupsand/or abilities do I have to work withwhen I surf? How good is my upper bodystrength? How good is my endurance?How comfortable am I in the ocean?Once in the water, how much help can Iexpect from my friends? And finally, howgood do I see myself becoming in the fu-ture? Most surfers dream of bomb drop-ping 80-foot monsters like Laird Hamiltonor sending plumes of spray to the strato-sphere like Kelly Slater. But you really doneed to think about what it is you want todo once you are on the wave. Are youlooking to just cruise and easily catch the4-footers at your local beach break? Doyou have more of an aggressive streak andare looking to do cut-backs and charge 10-foot barrels in Baja? If you are honest with

yourself when answering these questions,when your board is finished, you'll end upmuch happier with what you get in return,and the result will allow you to surf moresuccessfully than if you had just purchaseda standard surfboard.

Whether you decide to go for a customcreation or an off the shelf board, there aretwo modifications I have found criticalwhen adapting a board. Those are strap han-dles and traction pads.

As far as board sizes go, keep in mindthat the thicker and longer the board, themore stable it will be in the water and theeasier it will be to paddle. The shorter andthinner the board, the faster and more ma-neuverable it becomes and the harder it willbe to paddle in the water. The key is to finda happy medium for both you and your in-jury/skill level.

Surfing is a true art form and like mostart, is subject to interpretation. What maybe good for one surfer may not be for an-other. My recommendation is to go to yourlocal surf shop and rent different boards forthe first few times you go out, each varyingin size and shape.

If you have never surfed before, or haven’tsurfed since the onset of your injury and arefeeling apprehensive, I recommend you locatea program such as “They Will Surf Again”(TWSA).

TWSA is a free program underwrittenby Life Rolls On and other generous spon-sors and is one of the foundation’s mostpopular programs. Injured athletes fromaround the country gather together for aday of surfing! TWSA connects dozens ofvolunteers with a handful of surfers withvarying spinal cord injuries and other dis-eases together for a day of excitement andjoy. Over the past few years, TWSA hasgrown, with events now being held inNorth Carolina, Florida and California. Ithas also become a major component of theUS Open of Surfing, the largest surfingcompetition in the world. Experienced wa-termen (and women) and lifeguards are al-ways present on the beach and in thewater.

in motionJoe Testaverde catches a wavethrough the Wheels2Water program.

RIDING THE WAVES. RIDING THE WAVES. Surfing after a spinal cord injury? Why not? Anything is possible, with a little help from friends.

My Son Can Surf A Mother’s Perspective

By Jennifer Kayler

My son, Patrick Ivison, sustained a spinalcord injury as a toddler when he washit by a car. Starting at a very young

age, Patrick became involved in every adap-tive sport there was. Surfing was one sporthe always wanted to try. He talked about itconstantly.

We live in Southern California and surf-ing is huge here. I didn't know what to saywhen he told me he wanted to surf becauseI thought there was no way in the world thissport was attainable for someone with a

spinal cord injury. Then, when Patrick waseight years old, we heard about a moviecalled "Step into Liquid" starring a surferwith an SCI named Jesse Billauer. Of coursewe saw the movie and Patrick immediatelycame home and emailed Jesse through hiswebsite, www.liferollson.org. Jesse wroteback right away.

That September, Patrick caught his firstwave! He's been surfing ever since. Patricksurfs two different ways. The first is on a 12-foot board called a wave ski or a tandemsurfboard. This board accommodates twosurfers at once. The surfer on the back usesa kayak paddle to get out in the water inorder to catch the waves and then Patricksits on the front of the board. He uses strapsand a kayak seat bolted onto the board to situp. The second way Patrick surfs is with thehelp of volunteers who paddle him out onthe board and then ride the wave with himholding onto him in a bear hug. Sometimes

there's another volunteer on the back of thesurfboard helping push the board throughthe water until the wave picks them up andoff they go.

It takes a lot of dedicated people whoknow what they’re doing to help Patrick surf

and he is so thankful for Jesse Billauer, LifeRolls On, and all of the volunteers thatmake it happen. The first time Patrick evercaught a wave he said he felt like he was fly-ing. All of you surfers out there know ex-actly what he means.

Patrick Ivison is able to surf with the helpof Life Rolls On volunteer, Sam.


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Bill Fertig began working for the NSCIAResource Center (RC) two years ago.After just three months, he became the

RC manager.Fertig was 45 years old at the time of his

injury in 1999. He was a municipal policepatrol/training sergeant in suburban Pitts-burgh for five years, and a police patrolmanfor 20 years before that. While riding hismotorcycle off duty one day, Fertig wasforced off the road by a vehicle that fled thescene, resulting in T7 paraplegia. Fertig re-members, “As is common, I felt lost as I rec-ognized my situation in the rehab facility.For one day I contemplated if I wanted tolive or not. By the next day, I realized thatthere was only one course and that was todig in, heal and learn how to live life to thefullest despite my injuries. Even though Iknew my police career was over I clung tomy law enforcement life.” Within a yearFertig was working as a 911 dispatcher. Healso volunteered as a peer support counselorat his former rehabilitation center. He did

this for five years before beginning his workwith NSCIA.

Fertig says, “Our role in the RC is onesimilar to my old police role. At the end ofthe day, I am able to help find answers to avariety of questions and point people in apositive direction. That is rewarding by it-self.” Returning to meaningful full timework after sustaining an SCI is one of Fer-tig’s proudest accomplishments.

Fertig speaks highly of his colleagues atthe RC. Charleene Frazier is the former RCmanager and a former SCI rehab nurse. Shehas been a member of the RC staff since 1999.Fertig notes, “She has mentored me using herextensive experience and always has been agood example of compassion and empathy.”

Daniela Castagnino has been an RC As-sociate for six years. “Daniela uses her per-sonal experience with SCI, as well as herknowledge and understanding of SCI re-sources to aid those making inquiries to theRC and she uses her organizational skills toupgrade and maintain our extensive website.She also has a knack for isolating key pointsin broad issues.”

Jason Hurst is the newest member of theRC staff. Bill says, “Jason also has an SCIand so he can relate to the important SCI is-sues. He brings his case management experi-ence, skills and insights to bear from thatperspective. Jason was injured by a randombullet. He tells me that while conscious inthe emergency room he made sure that hisboss would be notified that he wouldn't beable to fill his regular shift. He seems not tobear resentment at being injured through nofault of his own and keeps his humor and re-silience throughout, even though his New

Orleans home was destroyed by HurricaneKatrina and he had to evacuate to Houston.

Fertig’s motivation comes from peopleand things within his own life. “I don’t con-sider those I respect and admire as heroes,but it is sometimes humbling to see how ac-complished some of my peers are. This cancause me to try harder or tackle new things.”

At home in Pittsburgh, Pa, Fertig shareshis life with wife Noreen, a basic researcher inrheumatology. “She is my best friend and sup-porter and she amazed all who know her withher poise and strength when I was injured.”

Also near and dear to his heart are Fer-tig’s children. “My son Chris was in theCoast Guard Academy when I was injured.He was a record setting college wrestler andthree time all-American. He borrowed an-other cadet’s sports car and made it home inrecord time through a hurricane when heheard I was injured.”

Daughter Kathy was a high school sen-ior at the time and she took over many ofthe home responsibilities as Fertig made itthrough rehab. “She is often my confidant,”Fertig says. Kathy currently lives in Europe,but will return to the U.S. to attend lawschool in 2009. Kathy says of her dad, “Heis, without question, my biggest hero. He isa man of uncompromising integrity. Noforce on earth could compel him to dosomething if he had moral reservationsabout it.”

Besides working hard, Fertig enjoys wa-terskiing, stained glass work, remote controlmodel building and other shop hobbying,and vacationing and visiting with relativesand friends. He is also a handcycle rider andhas a personal goal of doing a 100 mile ride,

which he accomplished on a two-wheeledbicycle before his injury.

Fertig admits he can get angry or frus-trated at times, but feels he resets quicklyand is fairly steady. “I try to live life to thefullest even at some risk. My faith in Godbecame clearer to me during and after myrecovery.”

Speaking of risk, Fertig says, “I’d have afull dressed Harley Davidson again in aheartbeat were it not for what I put my fam-ily through when I was injured.”

Fertig is available Monday through Friday toanswer questions and give support to thosedealing with new injuries or those who havebeen injured for years but have new questions.

Bill Fertig, ResourceCenter Manager

staff profile

Resource Manager Bill Fertigenjoys outdoor activities.


By Bill Fertig,NSCIA Resource Center Manager

The Florida Spinal Cord Injury ResourceCenter (FSCIRC), established in Janu-ary 1994, serves as the statewide clear-

inghouse for information for persons whohave sustained an SCI, their families andfriends, healthcare professionals, supportgroups, the media and the general public.The purpose of the center is to increaseknowledge and awareness of SCI relatedresources, to help prevent secondary med-ical complications that can result from lackof knowledge, to foster independence andself-advocacy, and to provide immediateaccess to current information when neededby consumers throughout their lives.

FSCIRC director Justin Stark, origi-nally from New York, earned his bachelor’sdegree in business administration from

Florida Southern College. In addition tohis work with the FSCIRC, he is a wheel-chair athlete who participates in quadrugby, aka “murderball” and the directorof one of the largest international wheel-chair rugby tournaments in the world,which is held in Tampa, Fla. Justin joinedFSCIRC as the information and referralspecialist in 2003 and became directorthree years later. His background and per-sonal experience with SCI has enabled himto guide the FSCIRC’s highly regarded as-sistance programs to serve new and long-time injured persons in Florida. “There isno greater gift than having a positive im-pact on someone’s life and through the FS-CIRC, I can positively impact thousandsof individuals who have experienced thesame challenges I have faced,” says Stark.

The center serves the approximately10,000 Floridians living with SCI/D. FS-CIRC staff connects with these individualsin several ways. The primary connection isthrough the Brain and Spinal Cord InjuryProgram of the Florida Department ofHealth. State law requires this agency tonotify FSCIRC of the 400 to 600 newtrauma-related SCI injuries that occur inFlorida each year. FSCIRC staff distributescurrent related resources to all of these newreferrals. The center also publishes a bian-

nual newsletter that includes topics rele-vant to people with SCI and their familiesnationwide. The newsletter has a circula-tion of about 3,000. This newsletter isnow available from NSCIA as well.

The center also runs a statewide peer-mentoring network. Through this pro-gram, they match newly injured personswith mentors who have an SCI, haveadapted to a body that works differentlyand learned to live a fulfilling life. Thepurpose of the program is to help someonewho is newly injured learn what life can belike a few years down the road and to helpthem identify realistic goals and expecta-tions for a full and meaningful life. Men-tors and mentees are paired according tolevel of injury, gender and various otherdemographics. Currently there are 39 peermentors. FSCIRC is always looking to addpeople to the program. If you live inFlorida and are interested in being a men-tor, visit the FSCIRC website for details.

Collaboration with NSCIAThe FSCIRC and NSCIA have a history ofcollaboration. For instance, FSCIRC collab-orated with the Florida Alliance for AssistiveServices Technologies in underwriting thereprinting costs of the book “Rebecca Findsa New Way,” written by Connie Panzarino,

M.S., A.T.R. This book, through age- ap-propriate text and vivid illustrations, revealsto children ages four to eight how kids learn,play and live with spinal cord injuries andillnesses. The book is a featured children’spublication of NSCIA and is also availablethrough FSCIRC.

NSCIA Resource Center staff rou-tinely refer Florida residents to the FS-CIRC. Recently, the FSCIRC begandistributing SCILife newspaper to allnewly injured people with SCI in Florida.This gives them quick and direct contactto the national SCI information, resourcesand advocacy efforts of NSCIA.

The NSCIA Resource Center ispleased to have such a comprehensive re-source for our members and new contactsin Florida.

Contact information:The Florida Spinal Cord Injury Resource CenterTampa General Rehabilitation Center P.O. Box 1289 Room R 212, Tampa, FL,33601 http://www.flspinalcord.us/ [email protected] Phone: (813) 844-4286Fax: (813) 844-4322Toll-Free Phone: (800) 995-8544

Unique Support forFloridians with SCI/D

resource center

By Tari Hartman Squire,BAC Liaison to NSCIA Board of Directors

Acorda Therapeutics was an oddity whenit was founded in 1995. It was the firstbiotechnology company to focus on de-

veloping drugs to help people with spinalcord injury. Conventional wisdom at thetime held that it was impossible to repair

damaged spinalcord nerves andthat there wereso few peoplewith SCI that acompany wouldnever recoup itsresearch and de-velopment in-vestment even ifa new drug wasapproved.

But Acorda CEO Ron Cohen, a physi-cian and biotech entrepreneur, rarely listensto conventional wisdom. “The top academiclabs were making groundbreaking progresson the repair of damaged nerves in the spinalcord. I believed the time was right to focuson developing new drug therapies to im-prove the quality of life for those with spinalcord injuries.”

“One of the things that made a huge im-pression on me was learning more about

what a potentially devastating and compli-cated medical condition spinal cord injurycan be. People tend to be injured young andrequire medical attention and care for therest of their lives,” observes Dr. Cohen.“Imagine the possibilities for a drug thatcould improve a person’s function even a lit-tle bit – to allow them to move a finger ortwo, or to improve their bowel or bladderfunction. That would have a huge impact ontheir ability to care for themselves, to be in-dependent or to get back to school or work.”

In 2003, Acorda was the first companyto sponsor phase III clinical trials for peoplewith paralysis due to SCI. Those trials en-rolled 400 people at 80 clinical trial sitesthroughout the U.S. and Canada. The en-rollment challenge was substantial. For overa year, Acorda screened, by phone, over4,000 people, or almost two percent of theentire SCI population in North America. “Ican’t tell you how much we relied onNSCIA chapters to help with recruitment,”notes Tierney Saccavino, vice president ofcorporate communications at Acorda. “Thenational office and the Arizona chapter wentabove and beyond to help us reach the com-munity. They sent postcards, put postingsonline and in their newsletter, talked aboutthe study at meetings. They were an invalu-able partner to us.”

Unfortunately those trials did not suc-ceed. However, in the years since, Acorda hasconducted a successful phase III clinical trialof the therapy for people with multiple scle-

rosis and recently began a second phase IIItrial of Fampridine-SR in that population.

Andrew Blight, chief scientific officer ofAcorda, says, “Although the spinal cord in-jury trials were not successful, we hope thatwe’ve helped create knowledge, awarenessand expertise among SCI rehab centers thatwill provide the foundation for an expertclinical trial network, which could be usedby Acorda and by other companies as addi-tional therapies go into clinical trials.” Headds that the company hopes to rely onNSCIA and its chapter network again as itmoves some of its earlier stage research intoclinical trials.

Acorda’s focus on helping people withdisabilities to be as independent as possiblewas one of the main reasons why Acorda wasa founding member of NSCIA’s BusinessAdvisory Committee (BAC) in 2004. Sac-cavino explains, “We’re a small company,and it was quite exciting to learn how im-portant the disability community had be-come for so many really big companies, too.When I listen to other BAC members talkabout how hard their companies work to de-sign an accessible ATM or a cell phone thatis functional for someone with a mobilitydisability, I realize, ‘Oh, they get it, too.’ It’sall about integrating everyone into main-stream society.”

Marcie Roth, executive director andCEO of NSCIA, added, “Right from thestart, Acorda took an active role in the BACand has been a strong ally on a shared mis-

sion to build bridges between people withdisabilities and the businesses and industriesthat serve and/or employ them.”

To that end, Acorda has worked withNSCIA and the BAC over the years to spon-sor educational and market research pro-grams aimed at getting a betterunderstanding of how to reach the disabilitycommunity. This year Acorda will sponsora chapter leadership workshop in conjunc-tion with the SCI Hall of Fame in Washing-ton, D.C. The goal of this session is to sparkdialogue on day-to-day concerns of peoplewith SCI and to enable NSCIA to betterserve its members and constituents.

Spotlight on Founding MemberAcorda Therapeutics

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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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