scilife, vol. 4, no. 6

1SCI Hall of Fame Special Issue

SCI Hall of Fame Special Issue www.spinalcord.org Vol. 4, No. 6

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

By Santina Muha, SCILife Staff Writer

The National Spinal Cord Injury Associa-tion (NSCIA) honored 15 of the most accomplished and extraordinary mem-

bers of the spinal cord injury and disease (SCI/D) community at the 3rd annual SCI Hall of Fame™ induction ceremony and gala at the John F. Kennedy Center for the Per-forming Arts on Nov. 6.

“It was a privilege for NSCIA to honor so many qualified groups and individuals who are contributing every day to benefit those living with spinal cord injury or dis-

ease,” said Marcie Roth, NSCIA’s executive director and CEO.

Launched by NSCIA in 2005, the SCI Hall of Fame was created to recognize excel-lence and honor individuals and organiza-tions that have made significant contribu-tions to quality of life and advancements toward a better future for all individuals with spinal cord injury or disease. Participa-tion in this year’s process was strong, with more than 160 nominees nationwide.

This year’s inductees and their respec-tive categories were: Dean Kamen, inven-tor of the iBot Mobility System for Johnson and Johnson’s Independence Technology

Continued on page 6

NSCIA executive director and CEO Marcie Roth with Extreme Makeover: Home Edi-tion’s Senior Producer, Diane Korman and Executive Producer, Conrad Ricketts.Stars Shined at the Spinal Cord Injury

Hall of Fame Gala

Harley Thomas Receives Lifetime Achievement AwardBy Santina Muha, SCILife Staff Writer

NSCIA’s 3rd annual SCI Hall of Fame induction ceremony and gala conclud-ed on a bittersweet note, as NSCIA

immediate past president and longtime dis-ability activist Harley Thomas, who passed away September 4, 2007 was honored with the first Harley L. Thomas Lifetime Achieve-ment Award.

Accepting on Thomas’ behalf was his wife, Nancy Starnes who said, “Harley was a veteran, and nobody knows better than a veteran what it’s like to go through a war. You sitting in this room are part of that army. You all know what it’s like to go through the war of disability and how hard we have to fight everyday to try to remove this stigma of disability and the disenfranchisement that it means in our country today.”

The award recognizes Thomas’ extensive body of work and his tremendous positive impact on the lives of people with SCI.

“Harley will be deeply missed by the en-tire NSCIA family, and especially by those of us who knew him personally,” said Roth. “We share immense gratitude for Harley’s commitment to NSCIA and to the SCI community as a whole.”

Before his passing, Harley was inter-viewed for an SCILife profile and was asked about his contributions to the SCI com-munity. His response was, “I would like to think that I have made some small differ-ence through my many testimonies in the

House and Senate as well as public speaking and my visibility in public.” Thomas made more than a small difference, and this award in his honor will forever memorialize that.

Among his many achievements, Thomas proposed the concept of the Spinal Cord In-jury Hall of Fame and led the effort by NS-CIA in 2005 to create this annual program to celebrate and honor worthy individuals and organizations.

NSCIA will use this new award to honor others in the future, as appropriate candi-

dates are identified, using Thomas’ life of achievement as a high standard.

“Naming the award for our immediate past president was bittersweet,” said Pat Ma-her, president of the NSCIA board of direc-tors. “While it’s clearly on-target, awarding it posthumously to Harley through his wife and life partner, Nancy Starnes, wouldn’t have been our preference. Any future awardees will need to meet the highest pos-sible standard to have their name attached to this honor.”

In her acceptance address, Starnes high-lighted the humorous side of her relation-ship with a man as committed to his work as Harley was. “It’s a sad revelation when a young woman wants to go in and tantalize her beau and she finds at him at his com-puter working, saying, ‘I’ll be with you in a minute. I’ll be with you in a minute.’”

“Harley had a bit of a frisky side to him and he always enjoyed a bit of humor with his colleagues here, so I certainly hope that he’s looking down on this event and you as his colleagues, rather than up …to celebrate this moment with everyone.”

On a more serious note, Starnes urged all present to redouble their efforts in Thomas’ name. “So now there’s this call to action to all of you that have been honored tonight and all of the previous inductees. A call to action going out to a rising generation of leaders who must finish the job that some of us old folks have started.”

Nancy Starnes (left) with Marcie Roth accepts the Harley L. Thomas Lifetime Achievement Award on behalf of her late husband, Harley Thomas.

2 SCI Hall of Fame Special Issue


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 STAff ChIEF ExECuTIvE OFFICER: Marcie Roth ChIEF OpERATING OFFICER: K. Eric LarsonRESOuRCE CENTER MANAGER: Bill FertigRESOuRCE CENTER ASSOCIATE: Daniela CastagninoRESOuRCE CENTER ASSOCIATE: Charleene FrazierRESOuRCE CENTER ASSOCIATE: Jason HurstCOMMuNICATIONS ASSOCIATE: Santina MuhaDEvELOpMENT DIRECTOR: Russell Mark WEb SERvICES/pubLIShING: J. Charles Haynes, JDWEbMASTER: Nikolai Alexeev

BOArd Of dIreCTOrS Executive CommitteepRESIDENT: Patrick MaherIMMEDIATE pAST pRESIDENT: Harley ThomasChAIR, ExECuTIvE COMMITTEE: David BoningervICE-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, MDPaul MortensenChristine N. Sang, M.D., M.P.HJohn Fioriti Carmen DiGiovineDon DawkinsVeronica Gonnello Gretchen Fox

General CounselLeonard Zandrow, Esquire

SCILife PUBLISHerSpubLIShER: J. Charles Haynes, JD

SCILife is a publication of theNational Spinal Cord Injury AssociationOne Church Street, Ste. 600Rockville, MD 20850

SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease.

We welcome manuscripts and articles on subjects re-lated to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted.

Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorse-ment of organizations, products or services.

If you have any questions related to your membership with NSCIA, or would like 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.

For additional information on advertising in SCILife, contact: Advertising Sales Department,

SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401, tel 713.526.6900 fax 713.526.7787,

e-mail: [email protected]

SCILife © 2008

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resource center

Information and Support after a New SCI By Bill Fertig, NSCIA Resource Center Manager

Your family member has just sustained a spinal cord injury. Your loved one was transported to the nearest emergency

room. Someone dear to you is now medi-cally stable but you have been told that he or she is paralyzed and will not walk again. Doctors have diagnosed a significant SCI. Now what? Where do you turn?

The NSCIA Resource Center (RC) staff can help you begin to organize your thoughts, decide upon a course of action and find hope in the midst of this life-threatening injury. Most importantly, the RC staff will help you focus on both your immediate needs and long-term goals.

For example, once your loved one is sta-bilized, there will be an immediate need to identify the most appropriate SCI rehabilita-tion facility. Primary considerations include finding a program that specializes in SCI rehab and one which your health insurance will cover. Is your family member using a ventilator? Where is there a facility that will admit them and that has the capability to wean a ventilator dependent person down the road? Is there a facility that will serve his/her rehabilitation needs and still be close enough for you and other family members to visit? If the facility is out of state, does it have living quarters for accompanying fam-ily members? Family support is often cited as a huge component in successful rehab outcomes. RC staff will furnish the NSCIA facility selection guidelines fact sheet to assist in this process. (Go to www.spinalcord.org under NEW INJURY/REHABILITATION).

Insurance coverage for inpatient SCI re-hab is a primary consideration. Some health insurance plans limit the choice of facilities by requiring an in-network rehab facility. The NSCIA insurance guide at http://www.spinalcord.org/html/insurance/index.php can help you navigate the insurance maze.

Here are some recent individuals that we have assisted: An insurance company nurse case manager called the RC seeking rehab availability information for a woman in Michigan who sustained a C 6/7 complete SCI and other collateral injuries in an ATV accident two weeks earlier. The case man-ager was strongly encouraged to have the family contact the RC directly as well. Dan, the injured woman’s husband, contacted us at his first opportunity. Staff directed both Dan and the case manager to three accred-ited SCI rehab centers in Michigan. An RC staff member emailed Dan extensive infor-mation relevant to people with new injuriesand mailed a “new injury” packet to his home. As a result, Dan and his wife were

empowered to make informed decisions about her rehabilita-tion.

Pam, of Mis-souri, called the RC on behalf of her close friend Frank. His C 5/6 SCI from a mo-tor vehicle accident was recent but he had been moved from a trauma center to a nursing home that did not have an SCI rehabilitation pro-gram. Pam said the nursing home staff did not know how to care for someone with an SCI. RC staff put Pam in touch with the Shepherd Center in Atlanta, Ga. and Frank soon began his rehabilitation there. Pam says, “It was a Godsend that we found NSCIA.”

What about plan-ning for life after re-hab? Quite often, significant home modi-fications are needed before a person with an SCI can return home. Modification information is available at the RC and staff members with personal accessibility experi-ence are waiting to assist.

RC staff can provide crucial and timely information to people with new injuries and their families, offer free membership in NS-

CIA, provide relevant guidance on a multi-tude of SCI related subjects, make appropri-ate referrals or just listen with concern and empathy. If you do not locate what you are looking for in our extensive and continu-ally updated on-line resources http://www.spinalcord.org/resources, contact the RC at 1-800-962-9629 and staff members will be happy to provide additional assistance.


from the executive director Forum and Hall of Fame Highlight Our Power and PotentialBy Marcie Roth, Executive Director and CEO, NSCIA

Just days before the NSCIA annual mem-bership meeting, Chapter Liaison Com-mittee meeting and the 2007 SCI Hall

of Fame Gala, NSCIA proudly joined more than 25 national and New Hamp-shire disability organizations to host the Nov. 2 National Presi-dential Candi-dates Forum on Equality, Op-

portunity and Access, held in Manchester, N.H. NSCIA’s New Hampshire and Boston Chapters were among the regional leaders co-hosting with NSCIA, the American Asso-ciation of People with Disabilities (AAPD), AARP, Paralyzed Veterans of America, the

National Council on Independent Living, United Spinal Association and other groups representing the broad spectrum of our shared constituency of more than 40 million potential voters, their families and others who are a part of their lives.

The room was packed with more than 600 voters with disabilities from New Hampshire, who all joined us to hear from the 2008 presidential candidates. All of the leading candidates were invited with equal effort shown toward getting the democrats and republicans to attend, by senior leaders with significant access to decision-making schedulers and the candidates.

Five presidential candidates attended in person to share their positions on a variety of disability issues (Clinton, Biden, Dodd, Kucinich, Gravel), one candidate sent a sur-rogate to provide a message on his behalf (Edwards), and one joined via phone call (McCain).

The AAPD website describes each of the candidates’ messages as follows:

Senator Clinton - Community Choice Act, ADA Restoration, reinstating President Clinton’s executive order calling on federal agencies to hire 100,000 people with dis-abilities within five years.

Senator Biden - State implementation and Department of Justice (DOJ) enforce-ment of the Olmstead decision, education for all.

Senator Dodd - Help America Vote Act (HAVA), strengthening enforcement of the ADA, affordable, accessible transportation, fully funding IDEA, improving access to telecommunications and technology, his sis-

ter Carolyn, who is legally blind.Congressman Kucinich - his single-

payer health care plan, his childhood experi-ence with a speech impediment

Congressman David Bonior (on be-half of Senator Edwards) - the connection between disability and poverty, improv-ing accessible transportation, fully funding IDEA, reinstating President Clinton’s execu-tive order of hiring 100,000 people with dis-abilities into the federal workforce

Senator Gravel - his criticisms of repre-sentational government and his recommen-dation that laws be made by the people di-rectly, his childhood experience with dyslexia and his adult experience with neuropathy.

Senator McCain - improving services for returning veterans with disabilities, strength-ening the ADA.

A full transcript of the event, which was moderated by Ted Kennedy Jr., with a wel-come given by AAPD Board President Cher-yl Sensenbrenner, spinal cord injury survivor and wife of Rep. Jim Sensenbrenner (R-Wis.), is available at www.aapd.com/News/election/downloads/forum_trans_allday.pdf.

This event was a true watershed for the disability community and even those can-didates who did not attend seem to be tak-ing us (and the power of the disability vote) much more seriously. This should serve us well as we try to get our issues highlighted in the primaries and then the general elec-tion, critical steps that lead to greater focus on disability issues and solutions from the next Congress and the next administration! Find a campaign you like and get involved if you want your voice heard!

Fresh on the heels of that important fo-rum, I returned to Washington just in time to welcome NSCIA’s members, board and friends to a colossal three-day series of meet-ings and events. The 2007 Hall of Fame Gala was the highlight and the packed house at the John F. Kennedy Center was buzzing with excitement over the induction of 15 new members of the SCI Hall of Fame and recognition of another emerging leader. We also joined in celebrating the memory of Harley Thomas.

We are so proud of our SCI Hall of Fame and all it represents. The 39 members who have been inducted and the hundreds of nominees over the past three years all highlight the power and the potential of our community.

The work of the NSCIA board, our chap-ters and our Business Advisory Committee made the gathering especially productive and I am very excited about the Spinal Cord Leaders Council (SCLC), launched at the 2006 SCI Summit. The SCLC and its struc-ture will allow us to use our collective voice and our shared priorities to achieve impor-tant policy wins for people with spinal cord injuries and disorders.

In closing, I wish us all a productive 2008! It will be a year of great celebration (NSCIA’s 60th anniversary) and many changes, given the political calendar. Please remember that NSCIA individual membership is offered free to everyone who shares our mission. This is only possible through your support. If you like what NSCIA is doing, please make a tax deductible donation in support of our continued work. Thank you!

Platinum SponsorsMedtronic FoundationSelect Equity Foundation

Gold SponsorsAcorda TherapeuticsKennedy Center for the Performing Arts

Silver SponsorsThe Craig H. Neilsen FoundationUnited Spinal Association

Bronze SponsorsMotorola

Supporting SponsorsAbilities ExpoChristopher and Dana Reeve Paralysis FoundationPfizer

Scholarship Sponsor Shepherd Center

Family SponsorJohnson & Johnson/Independence Technologies

In Kind SponsorsNew MobilityAbility MagazineHDI Publishers

NSCIA Thanks the Sponsors of the 2007 SCI Hall of Fame


from the president

Family and MissionBy Patrick Maher, President, NSCIA Board of Directors

On the heels of our 3rd Annual SCI Hall of Fame and associated key meetings with our Business Advisory

Committee(BAC), chapters, board of direc-tors and the Spi-nal Cord Lead-ers Council, I have reflected a bit on the na-ture of family. Like many baby boomers, I grew up in a large and traditional fami-ly- both parents, six kids, and a

Labrador retriever. The definition of family has broadened over the years, I think for the better. At its core, I think of family as those significant others with whom you share life’s toils, experiences, aspirations, joys and sor-rows. In that respect, all of our key friends within NSCIA are clearly members of our family, as we are members of theirs.

NSCIA recently celebrated the life of a very key and dear family member. Our immediate past president, Harley Thomas,

passed away after battling like the soldier he was with an aggressive, ultimately fa-tal, health condition. Each of us had our own unique relationship with Harley. I’ll briefly speak to mine. At last year’s Hall of Fame celebration, I had the privilege of sitting shoulder to shoulder with Harley as we watched an entertainer with a disability on stage at The Kennedy Center. We were both, I believe, somewhat distracted as both of us would play our part in the upcoming ceremony. That noted, there were moments when I recognized what an impressive am-bassador Harley was for NSCIA, strong and focused, yet being in the moment and appreciating the grandeur and significance of the event. It is an evening I’ll not soon forget.

We have added family this year as well. Our membership grew to more than 20,000 strong. Fifteen highly deserving nominees were inducted into the SCI Hall of Fame, underscoring the amazing work being done within our “family.” We have added strong new members to both our staff and board of directors.

We celebrated the future of our family by awarding the second Emerging Leader Award at the SCI Hall of Fame Gala, hon-oring not only this year’s winner of that award, but all those worthy nominees from around the nation.

And finally, we added to our family legacy with the creation of the Harley L. Thomas Lifetime Achievement Award, set-ting a high standard for those of us continu-ing the fight that Harley fought so well.

How fitting that we met in our nation’s

capitol shortly after the ADA Restoration Act was introduced in the U.S. Congress and subcommittee hearings were held. This cornerstone legislation supports each of our missions, shared and unique, and the awareness of our family and the need to re-main strong and committed to the cause of equality and opportunity for all persons liv-ing with spinal cord injury or disease, and indeed any disability, is in sharp focus. It was and is a critical time for us to collective-ly discuss, debate, support and strengthen the mission of NSCIA as well as the indi-vidual and collective missions of so many

exceptional organizations dedicated to the broader mission of equality for all.

Congratulations to all of the newly in-ducted SCI Hall of Fame members! Thanks to each of you and your organizations for your extraordinary efforts. A heartfelt thanks as well to our members, chapter leaders, staff, board, BAC advisors, and SCI leaders!

With Harley’s passing, each of us in the NSCIA family needs to take a little extra weight on our shoulders to move the mis-sion forward. We owe that to Harley as well as to one another.

UAB MODEL SPINAL CORD INJURY CARE SYSTEM-SPAIN REHABILITATION CENTERBirmingham AL(205) 934-3283http://main.uab.edu/show.asp?durki=10712

THE ROCKY MOUNTAIN REGIONAL SPINAL INJURY SYSTEM-CRAIG HOSPITALEnglewood CO(303) 789-8306http://www.craighospital.org

NATIONAL CAPITAL SPINAL CORD INJURY MODEL SYSTEMNational Rehabilitation Hospital |MedStar Research Institute|.Washington, DC(202) 877-1425(202) 877-1196http://www.sci-health.org

GEORGIA REGIONAL SPINAL CORD INJURY CARE SYSTEM-SHEPHERD CENTER, INC.Atlanta, GA(404) 350-7591http://www.shepherd.org

UNIVERSITY OF MICHIGAN MODEL SPINAL CORD INJURY CARE SYSTEMAnn Arbor, MI(734) 763-0971http://www.med.umich.edu/pmr/modelsci

NORTHEAST OHIO REGIONAL SPINAL CORD INJURY SYSTEMCleveland, OH(216) 778-8781http://www.metrohealth.org/body.cfm?id=2283

UNIVERSITY OF PITTSBURGH MODEL CENTER ON SPINAL CORD INJURYPittsburgh, PA(412) 586-6941http://www.upmc-sci.org

NORTHWEST REGIONAL SPINAL CORD INJURY SYSTEM-UNIVERSITY OF WASHINGTON Seattle, WA(206) 685-3999http://depts.washington.edu/rehab/sci

NORTH MEMORIAL MEDICAL CENTERRobbinsdale, MN(763) 520-5200http://www.northmemorial.com/rehab

BROOKS REHABILITATION HOSPITAL-UNIVERSITY OF NORTH FLORIDAJacksonville, FL(904) 858-7600http://www.brooksrehab.org/why-brooks/rehabhospital

PINECREST REHABILITATION HOSPITAL (CARF)Delray Beach, FL(561) 495-0400http://www.pinecrestrehab.com/CWSContent/pinecrestrehab

Organizational Members of NSCIA

FLORIDA SCI RESOURCE CENTERTampa, FL(800) 995-8544http://www.flspinalcord.us

PUSH TO WALKBloomingdale, NJ(973) 291-6370 http://www.pushtowalknj.org

HOSpItAl MeMberS Of NSCIA

In addition to our more than 20,500 individual members, NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders.

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


Stars Shined...Continued from page 1division and founder of For Inspiration and Recognition of Science and Technology (assis-tive technology); Dana Reeve (1961-2006), founding board member of the Christopher and Dana Reeve Foundation and Craig H. Neilsen (1942-2006), former chairman and CEO of Ameristar Casinos and founder of the Craig H. Neilsen Foundation (benefac-tor); Ron Cohen, president, CEO, founder and director of Acorda Therapeutics, Inc. (corporate executive); Mark Johnson, ad-vocacy director for the Shepherd Center and early member of ADAPT (disability activ-ist); Gary Karp, author, journalist, editor, speaker and trainer (disability educator); Extreme Makeover: Home Edition, Emmy award winning ABC-TV program helping families with home accessibility (entertain-ment); Dan Wilkins, founder of the Nth Degree (entrepreneur); Michael Collins, executive director of the National Council on Disability and former executive director of the California Statewide Independent Liv-ing Council (government executive); Chris Canales, co-founder of Gridiron Heroes Spi-nal Cord Injury Foundation (grassroots orga-nizer); Kelly Buckland, executive director of the Idaho State Independent Living Council and president of the National Council on Independent Living (legislative); Montel Williams, Emmy award winning talk show host and founder of the Montel Williams MS Foundation (media); Kim Anderson, researcher in neurological surgery at Reeve-Irvine Research Center (research in basic science); Susan Harkema, rehabilitation di-

rector of the Kentucky Spinal Cord Injury Research Center and the director of research at Frazier Rehabilitation Institute (research in quality of life); and Renee Tyree, Paralympic gold, silver and bronze medalist (sports).

Singer/songwriter J.P. Williams opened the formal program with a performance on the Kennedy Center’s prestigious Millen-nium Stage.

Award winning journalist Leon Harris, formerly of CNN and currently the news anchor for ABC7/WJLA-TV and co-host of Capital Sunday, served as Master of Cer-emonies and was joined by 2005 SCI Hall of Fame inductee Marilyn Hamilton and senior NSCIA leadership in honoring the inductees.

Two other awards were presented at the SCI Hall of Fame Gala. The NSCIA Emerg-ing Leader Award was presented to Chris Skinner, and the first ever Harley L.Thomas Lifetime Achievement Award was awarded to the late Harley Thomas, whose widow, Nan-cy Starnes, accepted on his behalf.

“The Spinal Cord Injury Hall of Fame gains momentum and energy year-to-year,” said Pat Maher, president of the NSCIA board of directors. “I remember being en-thralled with last year’s event and the energy in the room, but I was even more impressed with our third annual Hall of Fame. The great turnout and the powerful video mes-sages from those few inductees who were not able to attend truly added to the excitement of the evening.”

“Extreme Makeover: Home Edition,” this year’s inductee in the entertainment cat-egory, shared a video montage of homes the television program has helped to make ac-cessible for those using wheelchairs. Conrad Ricketts, executive producer of the program

and Diane Korman, senior producer, accept-ed for the entire cast and crew of the popular show. “We feel like we have the best job in the world,” Korman said.

Ricketts thanked fellow 2007 inductee Dean Kamen, whose assistive technology was featured on one episode. Kamen accepted his award from the iBot Mobility System which he invented, demonstrating a key feature of the product by speaking at the “standing level microphone” from a wheelchair.

In the category of benefactor, there were two posthumous inductions. Accepting the award for Dana Reeve was the president of the Christopher and Dana Reeve Founda-tion, Peter Wilderotter and accepting on behalf of Craig Neilsen was Ann Cody, a member of the Craig H. Neilsen Founda-tion’s grant application review team.

Television talk show host Montel Wil-liams, founder of the Montel Williams MS Foundation, was inducted in the media cat-egory. While unable to at-tend, he sent an acceptance letter which was read by Harris. Williams wrote, “I’m honored that the Nation-al Spinal Cord Injury Associa-tion considered nominating me into the Hall of Fame, and am pleased to be inducted. I am grateful to be recognized by

an organization that is dedicated to support-ing, educating, and empowering those with life altering conditions.”

Mark Johnson, inductee in the disability activist category, thanked NSCIA and mem-bers of the audience for “claiming disability as an identity.”

Gary Karp, this year’s inductee in the disability educator category, joked that as he lay on the ground right after his injury the first thought that ran through his head was, “Someday I will be inducted into the SCI Hall of Fame.”

In addition to Marilyn Hamilton (2005, entrepreneur), Joe Shapiro (2006, media) was also in attendance.

“As the list of SCI Hall of Fame mem-bers grows, it is exciting to realize that what started as a dream has become a reality, and a long overdue tribute to people who are making a real difference in the lives of people with SCI/D,” said Roth.

Assistive TechnologyDean KamenMark LoreStephen W.J. Seager, DVMLisa Walther, PTA, ATP

BenefactorGloria EstefanCraig NeilsenDana Reeve

Corporate executiveKevin BradleyMary BroonerRon CohenPhyllis GrayRobert KleinSusan Mazrui

disability ActivistRuss BohlkeTerri DavidsonMark JohnsonTerence J. MoakleySam SchmidtStephanie ThomasPaul TobinElizabeth TrestonRoland Winters, Jr.

disability educatorKimberly CatoeJames CesarioKathleen L. Dunn, RNJeff EbenTerry EnsignBrenda GilmoreGary KarpSteven Kirshblum, MDInder Perkash, MD, FACS, FRCSNick SuckowMichelle WhiteMontel WilliamsTerry Winkler, MD

entertainmentCharlene CurtissGloria EstefanExtreme Makeover: Home EditionZen GarciaRichard GaskinJudith SmithMontel WilliamsRobin Williams

entrepreneurMurray KrasnoffJoel LerichDan Wilkins

Government executiveOllie CantosMichael CollinsMargaret Giannini, MD, F.A.A.P.Jennifer Sheehy Keller, MBA

Grassroots OrganizerChris CanalesMarilyn GoldenMark JohnsonCasey Adisa MarengePaul RichterStephanie E. RussellBrian Sheridan

LegislativeKelly BucklandRep. Steny HoyerDon ReedJames J. Weisman

MediaCliff CraseHarriet McBryde JohnsonJeff LeonardRichard LynchSantina MuhaGreg SmithMontel Williams

research in Basic ScienceKim Anderson, PhDRichard BorgensEdward Nieshoff, MDAlexander Rabchevsky, PhD

research in Quality of LifeTed DarzinskySuzanne Groah, MD, MSPHDarrell GwynnSusan Harkema, PhDPatrick HarlandTara Jeji, MDChristine N. Sang, MD, MPHMarcalee Sipski, MD, PMRLawrence C. Vogel, MDJohn S. Young, MD

SportsCheryl AngelelliJesse BillauerAnn CodyJim HayesDoug HeirRicky JamesPaul KrabbenhoftPatrick RummerfieldCarol SingleyRenee Tyree, PharmD, CDRSMark Wellman

emerging Leader AwardGinny BoydstonKelley Jean BrooksChristopher S. BurtonW. D. Chrisner III, C.R.C./L.P.C.Jeff EbenGeorge FloresJessica GreenfieldRobert JoynerCharles W. Lamb, Jr.Karen MinerErynn NortonMike NyeholtRichard SkaffChris SkinnerBrewster ThackerayElizabeth TrestonSteve Williams

2007 SCI HAll Of fAMe NOMINeeS

NSCIA president Pat Maher inducts Dean Kamen, inventor of the iBot.


6 September/October 2007

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

Attorney Ronald R. Gilbert

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

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

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

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

• Helped sponsor legislation benefitting spinal cord injuredpersons.

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

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

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

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

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

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

° Helped sponsor legislation benefiting spinal cord injured persons.

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

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

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

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

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

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

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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

Name

Street

City, State, Zip Phone

E-mail (very important, if available)

NSCIA Member ServicesSCILife, HDI Publishers, PO Box 131401,

Houston, TX 77219-1401Phone (713) 526-6900

Toll free (800) 962-9629Fax (713) 526-7787

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

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

Become a Member Today.It’s Free!

JOIN OUR GROWING NATIONAL FORCEFOR CHANGE

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scilife19:SCILIFE 12/30/2007 21:50 Page 6

Chris Skinner: 2007 Emerging Leader Award RecipientBy Cheryl Stowe, SCILife Correspondent

Talking with Chris Skinner is like being shot out of a cannon: the pace is thrill-ing, the energy is palpable. “I have a

burning desire inside of me to try and make any and every person I come in contact with more aware of and educated about spinal cord injuries,” said Skinner. So it is no sur-prise that he won the 2007 Emerging Leader Award at NSCIA’s 3rd Annual SCI Hall of Fame ceremony.

In 2000, Skinner became quadriplegic in a car accident after drinking too much at a fraternity party. At age 20, the life of this athletic college student changed dramati-cally and forever. But rather than succumb to self-pity, he seized this as an opportunity to grow both psychologically and spiritually. “I am a person that believes everything hap-pens for a reason and that God is in total control,” he says. “I don’t like to sit around and ask, ‘Why did this happen to me?’ In-stead I like to take whatever situation I’m dealt on a daily basis and make it count. Hence the mantra of my organization, ‘Life Matters, Make It Count!’”

Skinner returned to school at Radford University in Virginia and received a mas-ter’s degree in community counseling. He credits this early success and optimism to his belief in God and to the guidance of his mentor, Robin Clark. Clark, a fellow quad-riplegic with the unique wisdom of someone with 30 years experience using a wheelchair, motivated and educated Skinner to become a tireless self-advocate and inspired in him the desire to help others. The two met dur-ing Skinner’s initial inpatient therapy. As Skinner describes it, he was “lying in a bed crying while having a pity party.” Skinner’s mother sought Clark out, as he exercised in the gym, to counsel and advise her son.

“I remember at first we had a love-hate relationship,” Skinner says. “I hated the fact that he told me the truth about being a quadriplegic and that it was going to be challenging, but I loved his sincerity and his commitment to help me get through the tough times.”

Clark asked Skinner to truly think about his goals. “He said, ‘You’ll never walk again just laying there in that bed crying. You have to get up and fight. If you want to walk again, you have to start with the little things and accomplish one goal at a time!’”

To this day, Clark continues to visit peo-ple with new spinal cord injuries.

Skinner wrote his autobiography, “The Ultimate Learning Experience” and shares the lessons of his life through motivational speaking engagements to colleges, schools, businesses, church groups and civic organi-zations. He has been a guest speaker at nu-merous conferences on disability awareness and substance abuse issues.

Skinner is passionate in his work to

educate medical professionals about the specialized needs of quads in order to make sure others do not face the same obstacles and problems he did. “Medical profession-als, generally speaking, learn so much in a certain period of time, but unless they are specifically a spinal cord doctor, they are go-ing to be more limited in their knowledge about SCI.”

When Skinner experienced symptoms of autonomic dysreflexia at home, the staff of the hospital in his area had limited knowl-edge of this serious condition. He was forced to bypass the emergency room staff and seek out a doctor or nurse who might help him.

“After everything was said and done and I received the care I needed, my wife and I made sure we wrote a note to the nursing supervisor letting her know what had hap-pened. Because my wife Suzie is a physical therapist, they asked her to put together a package about autonomic dysreflexia and then they gave an in-service to their hospital staff. Now, when I go to my local hospital and mention that I’m experiencing auto-nomic dysreflexia, I am seen right away and they understand the severity of the situa-tion.”

Skinner’ nonprofit corporation, The Chris Skinner Organization, Inc. (www.chrisskinner.org) is currently working on a video project as an introduction to people with a new SCI, including interviews and real life stories. It will present “a realistic and educational view” of issues such as au-tonomic dysreflexia, pressure sores, and re-lationships and provide resources for those with new injuries. “We are not educated enough on what individuals with disabilities go through on a daily basis.”

In addition, Skinner will soon be fea-tured in a film. “Enigma Productions has followed me around for the past four years and has captured hundreds of hours of foot-age.”

In 2004, Skinner married Suzie, and six months ago the two welcomed twins Caleb and Alethia into their lives.

NSCIA members selected Skinner as the 2007 Emerging Leader out of a field of 17 nominees. Nominees for this award exhibit exceptional leadership qualities that may in-clude managing others, leading by example, mentoring, transferring knowledge, taking a risk to achieve a desired outcome, delegat-ing tasks in a clear and logical manner, mo-tivating others to strive beyond what they believe can be accomplished and growing their effort or organization in both size and scope. Of his fellow nominees, Skinner says, “When I read some of the other nominees’ biographies, I was completely blown away by the number of people who are accom-plishing mind boggling things.”

Mind boggling, indeed. Mike Nyeholt, a three-time AAU and

college all-American freestyle swimmer at the University of Southern California from 1975 to 1978 and competitor in the 1976 Olympic trials, was paralyzed from the chest down in 1981. Since that time, his foun-dation, the Physically Challenged Athletes Scholarship Fund, has raised over $7.5 mil-lion for athletes with disabilities, primarily those with spinal cord injuries. Nyeholt is senior vice president of Capital Guardian Trust Company in Los Angeles.

Ginny Boydston serves as the director

of therapeutic recreation at Methodist Re-habilitation Center in Jackson, Miss. Since coming to MRC in 1978, she has worked diligently to introduce her patients to sports such as quad rugby, tennis, cycling and bas-ketball. Said one of her patients, “Discov-ering I could still participate in sports like hockey and water skiing was a turning point for me…(these) programs have strength-ened my mind and body and made me more fit so I can try to make a difference.”

Jessica Greenfield sustained a spinal cord injury the summer before her senior year in high school. She wanted to create a camp specifically designed for young women with

disabilities, so she worked with Shriners Hos-pitals for Children in Chicago to create Good Life and Healthy Mind (GLAHM) in 2006. The four-day camp provides makeovers, bou-tique shopping and girl-friendly outings for teenagers with spinal cord injuries.

Each of these determined individu-als and the other nominees all exemplify leadership in the SCI/D community. As Skinner points out, “People can accomplish anything they want as long as they put their whole heart, mind and soul into it.”

To learn about all the 2006 and 2007 nominees for the Emerging Leader Award, visit www.spinalcord.org.

Emcee Leon Harris presents Chris Skinner with the Emerging Leader Award.

8 SCI Hall of Fame Special Issue8 SCI Hall of Fame Special Issue

Both Dana Reeve (1961-2006) and Craig H. Neilsen (1942-2006) were inducted in the Benefactor category.2007 inductee Mark Johnson chats with 2005 inductee Marilyn Hamilton.

NSCIA inducted 15 more individuals into the SCI Hall of Fame.

Longtime disability activist Yoshiko Dart with Asuka Sato of the Disability and Development Unit of the World Bank.

Chris Canales, Grassroots Organizer inductee with NSCIA Communication Associate Santina Muha. Marcie Roth inducts Kelly Buckland in the Legislative category.

Gary Karp, inducted in the Disability Educator category, finished his speech with a little juggling.

Michael Collins was inducted in the Government Executive category.Marcie Roth and Nancy Starnes share a hug after the presentation of the Harley Thomas Lifetime Achievement Award.

Emcee Leon Harris.

Kim Anderson was inducted in the Research in Basic Science category.

Ron Cohen (right), inductee in the Corporate Executive category, with NSCIA’s Pat Maher.

Extreme Makeover: Home Edition’s Senior Producer Diane Korman and Executive Producer Conrad Ricketts accepted the induction of the pro-gram in the Entertainment category.

Renee Tyree, inductee in the Sports category.Dan Wilkins, inducted in the Entrepreneur category, sent a video accep-tance in his absence

9SCI Hall of Fame Special Issue 9SCI Hall of Fame Special Issue

Montel Williams, inducted in the Media category, sent a written speech read by Leon Harris in his absence. Susan Harkema was inducted in the Research in Quality of Life category.

(from left) Front: Pat Maher, Paul Tobin, Santina Muha; Back: Marcie Roth, Jim Weisman, Joe Canose, Andrew Morris, Peggy Hathaway, Peter Wil-derotter, Eric Larson.

2007 SCI HALL OF FAME GALAThe 2007 SCI Hall of Fame inductees pose here with NSCIA staff and board members.

NSCIA President Pat Maher (front) with staff and board members (from left) David Boninger, Eric Larson, Janeen Earwood, and Marcie Roth.

Inductee Kelly Buckland with Tapan Banjeree and Deb Cotter.

Nominee in the Entertainment category Richard Gaskin, AKA Professir X (seated) with (from left) relatives Pascal Brutus and Juanita Gaskin and board member Veronica Gonnello.

Disability Educator Inductee Gary Karp with wife Paula looking through the evening’s program before the start of the ceremony.

Emerging Leader nominees Jessica Greenfield & Chris Skinner meet and greet at the ceremony.

Chris Canales thanks family as he is inducted into the SCI Hall of Fame.NSCIA’s publishing partners Joyce Parker and Nick Alexeev with Director of Development Russell Mark.

The NSCIA gala underway on the evening of Nov 6 at the Kennedy Cen-ter.


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in motion Addicted to FencingBy Zen Garcia

There’s nothing like being in a frame dis-tanced off from another competitor about to fling a sword at you, with only training

and instinct between you and their blow. Fenc-ing satisfies that able-bodied part of me that used to spend hours pre-injury in dojo training with other martial artists. Having had previous years of experience and a particular affection for combat, I was glad to get involved with the fencing team and again train like I once had. It allows me to push myself again to the point of exhaustion and feel the experience of physical exertion with others that have been pursuing achievement for years.

I find exercise and movement better relief for my body than the pills that doctors pre-scribe for stiff joints, pain, or arthritis. Since working out and becoming stronger, my pain level has decreased a hundredfold. Before join-ing the Shepherd fencing team, I worked out but it was never on a serious note or for any particular reason.

Fencing is a sport that even someone with a C5 complete injury like me can do. People with quadriplegic level injuries are often ex-cluded from a lot of sports that require hand or full arm capacity, but with fencing I was able to tie the sword to my hand, allowing grip. I had no idea that I would become so thor-oughly entrenched in a sport or that it would have such a positive impact on my life. You

do what you can with what you’ve got, that’s the bottom line. Take it from someone who can’t push himself up from a lying position, you do what you can. Sport, though predomi-nately exercise for the body, is also beneficial for mind and spirit, helping one develop focus, will and discipline.

Weapons in fencing are called epee, foil and sabre. Epee is a long, thin, thrusting rapier type weapon with a blunt tip that depresses inward once contact is made. A fencer scores by hitting their opponent anywhere above the waist. Epee is a first blood type weapon in which you score by making contact with your opponent’s body before they score on you. Also with epee, both combatants can score at the same time as long as their attacks are near simultaneous. Foil is thinner and lighter, with the same blunt, depressing tip. With foil, the only legal target areas are the midsection, shoulder and back. The arm, hand and head

are not counted as targets. Also in foil, one must have the right of way, which means one must have the right of attack to score a point. It is similar to volleyball when a team must be serving score. One must deflect an opponent’s attack to then have the right of way. Sabre is a slashing and thrusting weapon that has a long, slender blade and is held more like a machete or a cutlass than a rapier. There is no depress-ing tip as the whole length of the blade is used to score on one’s opponent. In sabre, one can attack any part of the body from the waist up.

These weapons are connected by wire to a scoring box that counts touches as fencers score on each other. In tournaments, usually men fight epee one day with women fighting foil. The next day men fight foil and women fight epee. On the last day of competition, men fight sabre. As of now, women do not fight sabre because there are not enough com-

petitors to create a women’s sabre class.Even though the American team won

five medals in the Atlanta World Cup, for us to compete at the levels of the elite inter-national teams we need more corporate and private sponsorships, so that we can practice more often. The Hong Kong team fights 36 hours a week. The Kuwaitis fight 48 hours a week. Most of my teammates on the Ameri-can team have day jobs. We practice together once a week for three hours, with the rest of our training coming on our own. All of us would love to focus more on fencing, but we have to make a living. If it were not for Shepherd and The United States Paralympic Committee, we would not even be able to practice as much as we currently do. To learn more about or to support the U.S. Wheel-chair Fencing Team in its quest for gold in the 2008 Paralympic Games in China, visit www.endeavorfreedom.tv.

Wheelchair fencing is a great way to get in motion.

Zen Garcia poses in fencing gear.


legalThe Slow Growth in Community-Based Services after OlmsteadBy Len Zandrow, NSCIA General Counsel

The U.S. Supreme Court ruling in the case of Olmstead v. L. C. is often acclaimed as one of the most important judicial deci-

sions on disability rights in the past decade.

The Olmstead DecisionThe Olmstead litigation began 12 years

ago, when two women with developmental disabilities sued the Georgia State Com-missioner of Human Resources, Tommy Olmstead. The two women had been vol-untarily treated in a state psychiatric unit. Eventually, they wanted to be treated in a less restrictive, community-based setting, but Georgia refused to accommodate them

based on a lack of adequate resources and placements.

The issues in Olmstead had broad po-tential impact on the disability commu-

nity, especially when the case reached the U. S. Supreme Court. NS-CIA joined in a friend-of-the-court brief filed with the high court and many members also

lobbied their states’ attorneys general to for-mally withdraw their support for Georgia’s position. Originally, 26 states filed a brief supporting Georgia’s appeal, but over half of them later withdrew under pressure from NSCIA and other disability organizations.

In 1999, the Supreme Court issued its landmark ruling - Olmstead v. L. C., 527 U.S. 581 (1999). In a 6-3 decision written by Justice Ruth Ginsburg, the Court held that Title II of the Americans with Dis-abilities Act (ADA) required that the two women receive care in the most integrated setting appropriate. The Court found that the unwarranted isolation of persons with disabilities in institutions was discrimina-tory. According to the Court, such segre-gation unduly hampered social contacts and

opportunities for employment, education and recreation. In addition, such discrimi-nation wrongly perpetuated unjustified as-sumptions that people with disabilities were not capable of fuller participation in the community.

The Court in Olmstead advised how states might ensure compliance with the ADA in the future. The Court ruled that states must make “reasonable accommoda-tions” in long-term care systems, but need not make “fundamental alterations” to the delivery of services. States must balance the cost of providing community-based care to individuals against the obligation to serve others fairly as well.

The “Integration Mandate” Since OlmsteadOlmstead was acclaimed as a far-reach-

ing victory in the disability community. An analysis of court decisions after 1999, how-ever, is not encouraging. Most courts inter-preting Olmstead have ruled against various ADA challenges. The courts have ruled in favor of states as long as they can prove that they are “actively engaged” in attempting to integrate individuals into the community, even if progress has been slow.

While most states have created so-called “Olmstead plans” addressing unnecessary institutionalization, little has been done to implement these plans. Funding for most of these initiatives has been sparse because of general budget pressures. In addition, states

have been reluctant to develop new commu-nity-based services linked to the closure of institutional beds. As a result, the expansion of programs in the community has generally been considered a cost drain, rather than a means of realizing potential savings.

Most of the progress in implementing Olmstead has occurred in those jurisdictions which have been sued. Litigation remains one of the most effective ways to combat unnecessary segregation.

One example is the case of Fisher v. Oklahoma Health Care Authority, 335 F.3d 1175 (10th Cir. 2003). In Fisher, individu-als with disabilities in a community-based Medicaid program sued Oklahoma officials who stopped providing them medically-nec-essary prescriptions benefits. The plaintiffs argued that ceasing to offer them subsidized prescriptions, while continuing to provide such benefits to people with disabilities in institutionalized settings, unfairly placed persons in community-based programs at high risk for premature entry into nursing homes. The 10th Circuit Court of Appeals agreed that the plaintiffs’ claim appeared to violate both the ADA and Olmstead and re-instated their cause of action.

The ruling in Fisher is nonetheless very fact-specific and of limited application. Broader legislative initiatives will be neces-sary if progress after Olmstead is going to be faster and less incremental.

who’s who at nscia?Russell Mark: NSCIA Director of Development

By Santina Muha, SCILife Staff Writer

Russell Mark, who joined the NSCIA team as the director of development in late September, may be the NSCIA’s

newest staff member, but he’s no stranger to the organzation’s mission.

Mark’s journey in development began in 1990, when he became part of Kaleidoscope Network, a pioneering national commercial cable television network based in San Anto-nio, Texas, that was developed to serve the disability community. In addition to work-ing with major advertisers that were already reaching out to this market niche, Mark worked directly with top national health as-sociations (including NSCIA), along with numerous advocacy leaders like Justin and Yoshiko Dart, Paul Hearne, Ginny Thorn-burg, Tony Coelho and Lex Frieden. Mark remembers, “My primary focus was to meld these relationships and develop the fund-ing to create television programming that we aired on our small cable network and later syndicated on other larger networks, including the Discovery Health Channel.” In addition, Mark developed unique video

products for many of these agencies to en-hance their educational programs and mar-keting/communications and fundraising capabilities.

After 10 years with Kaleidoscope, Mark worked with the National Mental Health Association (NMHA) in Washington, D.C. After a few years building NMHA (now Mental Health America), Mark started his own consulting business to help other national and local agencies build strategic partnerships to build resources for their organizations. “I realized after a couple of years, however, that I really enjoyed build-ing an organization from the inside. De-velopment, to me, is much more than just fundraising. It really is helping an organiza-tion to develop its infrastructure and out-reach to make it more readily fundable so it makes a bigger impact.” He wanted to work for an organization that, in his opinion, had very good success but needed to move to the next level in its growth. “I knew NSCIA from my previous experience at Kaleido-scope and had followed its achievement.”

Mark says, “I have a deep personal in-terest in our issues.” He does not have an SCI but his passion comes from living with his partner of 19 years, Michael, one of the earliest survivors of a genetic spinal disorder called Arnold-Chiari malformation. Ac-cording to Mark, Michael has fought severe chronic pain and seizures that have been im-mobilizing. “His perseverance in battling not only the physical and psychological barriers, but so many bureaucratic obstacles puts a fire in me to be a part of this fight for a higher quality of life that I believe every American, every human deserves.”

Of all of his accomplishments, Mark is especially proud of developing the first U.S. broadcast of the Paralympic Games from Atlanta in 1996. “These shows introduced

America to a new kind of elite sports competition with high inspiration and entertainment value, as well as presenting the audience with the full-life experience of international athletes with SCI and other disabilities.”

Mark has made himself into a well-rounded man. He is a singer and an ordained Baptist minister. He enjoys hiking and exploring the outdoors, as well as landscape design. He is also active with his local arts council and historic preser-vation group. “I’ve been involved with the performing and visual arts most of my life. I actually shot a scene with Tom Cruise in ‘Born on the Fourth of July’…I think all that remained after editing is a shot of my knee and my hands!”

Working in a virtual office, which Mark admits is “pretty sweet,” allows him more time to socialize with friends, be a part of his community and spend time with his four dogs and a cat, which he refers to as his children. He moved two years ago to a small town in upstate New York where he enjoys the slower pace and focusing on the important things in life.

Mark credits his parents and partner as his greatest mentors and friends. Most of his heroes are unknown, “people doing amaz-ing work in their communities with little or no recognition.” A recognizable hero of

Mark’s is Theodore Roosevelt. Mark, who has been told he resembles Roosevelt, says of him, “In spite of his disabilities, he used his power of personality and intellect to build our nation in many incredible ways.”

Mark also believes that in life, a great sense of humor is vital. “Learning to laugh in the darkest of times, has, for me, dis-pelled a lot of the fear that comes in those times and helped me see the path forward. I also think humor is a great equalizer in building relationships with other people. And relationships, I think, are what life’s all about.”

Editor’s note: Roosevelt had severe asthma throughout his life; became blind in his left eye and dealt with increasing deafness in his later years.

Russell Mark joined NSCIA as Director of Development in September, 2007.


Overactive bladder? Why not try a medical research study?

If you have a spinal cord injury between the C5 and C8 vertebrae or have multiple sclerosis that

essentially restricts you to a wheelchair, and suffer from an overactive bladder, we invite you to

find out if you qualify for the DignityToo Study. The purpose of this study is to determine the safety

and effectiveness of an investigational medication for managing the symptoms of overactive bladder. Physicians in your area are conducting the DignityToo Study. Qualified participants will

receive investigational study medication, medical exams, and lab tests at no charge. Financial

compensation for time and travel may also be available. Please visit www.DignityTooStudy.com

to learn more and for locations of participating physicians.

F O R P E O P L E W I T H S C I O R M S

Being near a bathroomHaving extra clothes on hand

Staying at homeNo drinking at night

6 September/October 2007

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

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

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Overactive bladder? Why not try a medical research study?

If you have a spinal cord injury between the C5 and C8 vertebrae or have multiple sclerosis that essentially restricts you to a wheelchair, and suffer from an overactive bladder, we invite you to fi nd out if you qualify for the DignityToo Study. The purpose of this study is to determine the safety and effectiveness of an investigational medication for managing the symptoms of overactive bladder. Physicians in your area are conducting the DignityToo Study. Qualifi ed participants will receive investigational study medication, medical exams, and lab tests at no charge. Financial compensation for time and travel may also be available. Please visit www.DignityTooStudy.com to learn more and for locations of participating physicians.

F O R P E O P L E W I T H S C I O R M S

Being near a bathroomHaving extra clothes on hand

Staying at homeNo drinking at night











































VOLUNTEER OPPORTUNITIES AT NSCIA

Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done

via phone and email, we can work with any motivated volunteer no matter what they live.

Volunteer support is vital to our organization’s ability to accomplish as much as we do with limited staff and budget. You can make a difference by…

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

…building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being.

…raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association.

…growing our membership. The Membership Committee works with the VP of Membership to promote the growth and develop-ment of the Association’s membership and helps to build and communi-cate the value of membership in NSCIA.

…supporting special projects. Our Resource Center also uses volunteers on a project basis, depending on current activity, ranging from research to phone/email contact to planning or staffing events.

…working with local Chapters. Most of our national net-work of Chapters also use volunteers and we would be happy to connect you with a Chapter in your area.

Committees typically meet monthly via teleconference, and time commit-ment varies but can be average little as 2 - 5 hours per month depend-ing on your committee, or as high as you want, limited only by your passion for progress.


By Rob Ingraham

In a broad new initiative aimed at coor-dinating national legislative and policy concerns, more than 20 leading organi-

zations dedicated to improving the lives of people with spinal cord injuries and disor-ders have formed the Spinal Cord Leaders Council (SCLC). The coalition will, for the first time, provide a single forum for foun-dations, hospitals, associations, research facilities, and regulators to articulate priori-ties for lawmakers and policymaking groups across the country on issues important to the SCI/D population.

Launched as a working group during the 2006 SCI Summit, hosted by NSCIA, the Spinal Cord Leaders Council was formal-ized by the leaders of the 19 active organiza-tions in November 2007.

Among the participating organiza-tions are the Christopher and Dana Reeve Foundation, the Kennedy Kreiger Institute, NSCIA, Paralyzed Veterans of America, the Sam Schmidt Paralysis Foundation, the Mi-ami Project to Cure Paralysis, Craig Hospi-tal, the American Spinal Injury Association, the Commission on the Accreditation of Rehabilitation Hospitals, National Reha-bilitation Hospital, the Shepherd Center, United Spinal Association, the University of Utah, Rehabilitation Institute of Indianapo-lis, and the Keck Center for Collaborative Neuroscience.

United Spinal Association was elected Secretariat of the new organization with president and CEO, Paul J. Tobin, elected chair. Based on the most important policy priorities submitted by each member, the group’s 2007-2008 policy agenda targets three major issues and the council created committees with timelines and benchmarks to track progress against each of these areas. Those areas and corresponding committees are: (1) Durable Medical Equipment and the controversial “In the Home” restrictions on wheelchair coverage from the Centers for Medicare and Medicaid Services. Cur-rent policy dictates that if a person with a disability needs a wheelchair for use only “in-the-home” –– that is, between his or her bedroom, bathroom or kitchen –– Medicare may cover the cost of a wheelchair or scoot-er. But if the individual needs to travel out-side the home, to a pharmacy, for example, or a grocery store, bank, place of worship, physician’s office, work, or school, cover-age is frequently denied or a wheelchair is provided that is suitable for inside use only. The council will work to change these un-reasonable policies. (2) The Christopher and Dana Reeve Paralysis Act. H.R. 1727 was recently passed by the House of Repre-sentatives and a similar bill is pending in the

Senate. This important legislation seeks to enhance and promote research into paralysis and to improve rehabilitation and the qual-ity of life for persons living with paralysis and other physical disabilities. The council will push for full approval and implemen-tation by Congress. (3) Candidate Health-care Platforms. The council will seek to ensure that presidential candidates are fully informed on critical healthcare issues of im-portance to all people with disabilities and that the candidates clearly articulate their positions. The council will urge that health-care priorities be candidly addressed in the 2008 national debates.

“One of NSCIA’s goals in convening the 2005 and 2006 SCI Summits was to bring together the leaders of the various or-ganizations and groups serving people with SCI/D, with a plan to get those leaders to work more closely together,” said Marcie Roth, NSCIA’s executive director and CEO. “We convened the first meeting of the lead-ership just a year ago, and I am thrilled that we have already formalized the group into the SCLC with formal structure, working committees and an active membership with broad representation.”

Getting the message out efficiently is one of the council’s primary goals and Lesley M. Hudson, MA, executive director of the American Spinal Injury Association, said, “The SCLC is a timely and appropriate step forward. Bringing together key leaders from associations whose members are dedicated to the improvement of all aspects of medical care and quality of life for individuals with spinal cord injury and disease adds a critical efficiency to the communication process. At this exciting and demanding juncture in the field of SCI medicine, the council will work to bring the unity of many voices to current and future initiatives on behalf of the con-sumer constituency being served.”

The council also affords smaller orga-nizations the opportunity to network with larger, more established groups. Ida Cahill, president and CEO of the Sam Schmidt Pa-ralysis Foundation, noted, “The formation of SCLC is a wonderful opportunity for all of us involved in this field to meet, exchange ideas, and, most importantly, arrive at a strategy where we speak with one voice and one vision. It is an honor for me to sit at the same table with so many larger, important organizations and know that the voice of the Sam Schmidt Paralysis Foundation will be heard. I firmly believe that collectively we will have a greater, positive impact on issues that affect people with spinal cord injuries or disorders.”

In addition, the council welcomes in-put from the regulatory community. Chris-tine M. MacDonnell, managing director of Medical Rehabilitation and International

Aging Services at the Commission for the Accreditation of Rehabilitation Facilities (CARF), noted, “CARF is pleased to be part of the SCLC. As a third party, international, private, not-for-profit accreditation system we are always interested in listening to the issues of the field to better meet our mission of enhancing the lives of those served in our accredited programs. CARF accredits Spinal Cord Systems of Care internationally and the standards are developed and revised by groups like the SCLC.”

The variety of participating organiza-tions and the wealth of talent is another source of strength. Suzanne L. Groah, MD, MSPH, director of the National Capital SCI Model Center and director of SCI Re-search at the National Rehabilitation Hos-pital, among other appointments, said, “I am thrilled that the SCLC has been con-vened, as it is a unique group of organiza-

tions and individuals with the multi-facet-ed backgrounds and skills necessary for the promotion of pertinent issues for people with SCI/D. I am excited to represent the National Rehabilitation Hospital (NRH) on the council. NRH has a longstanding interest and commitment to care and re-search on behalf of patients with SCI/D and through this involvement we, and other prominent members of the SCI/D community, can have a greater influence on policy, knowledge about SCI/D, and medi-cal rehabilitative care and research, with the ultimate outcome being to improve the lives of people with SCI/D.”

Rob Ingraham is Senior Editor at United Spinal Association, based in Jackson Heights, New York. He can be reached at [email protected]

Precedent-Setting SCI Collaboration to Coordinate Policy InitiativesNew Coalition will “Speak with One Voice” to Lawmakers

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

2008 SHOW SCHEDULE:

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WWW.ABILITIESEXPO.COM All events are wheelchair accessible.

NEW YORK METRO, NJNew Jersey Convention & Exposition CenterMarch 28-30

SOUTHERN CALIFORNIAAnaheim Convention CenterMay 30 - June 1

MINNEAPOLIS, MINNESOTAMinneapolis Convention CenterSeptember 12-14

EXPREAL PEOPLEREAL CHALLENGESREAL SOLUTIONS

The Spinal Cord Leaders Council convened in Washington, D.C.


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 N 16th 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 E McDowell 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, 32804Phone: (407) 823-2967

Contact: 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 DrUrbandale, Iowa 50322Contact: Tim Ascherl [email protected] Phone: (515) 270-1522Contact: Angie Plager Phone: (515) 554-9759Email: [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, NSCIA54 Wentworth AveLondonberry, NH. 03053Phone: (603) 216-3920Fax: (603) 432-1549Contact: Joan NelsonWebsite: www.nhspinal.org

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) 221-9255

Contact: 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, NSCIA2500 MetroHealth Drive Cleveland, Ohio 44109-1998 Phone: (440) 813-2783Fax: (440) 293-6503 Contact: Adam SweeneyE-mail: [email protected] Phone: 440.442.5550Contact: Jeff SchiemannE-mail: [email protected] Website: http://www.metrohealth.org/body.cfm?id=2391&oTopID=2391

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, Re-habilitation Dept. 1 Medical Park Drive, 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 E-mail: [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 Sup-port Groups, visit www.spinalcord.org, or call 800.962.9629.

If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office 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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