www.spinalcord.org

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

Vol. 2, No. 1Winter 2005

By Gary Karp,Executive Editor, SCILife

Christopher Reeve died at 5:20 p.m. onOctober 10, 2004 at the age of 52 ofheart failure, reported to be the result of

complications from an infected pressure sore.He had attended his son Will's hockey gamethe day before and then woken up in respira-tory distress in the early hours of the morn-ing. Reeve fell just short of the statistical oddsfor someone injured at age 40 and ventilator-dependent; the average life expectancy forsuch a person is 11.4 years. He lived justshort of ten with his quadriplegia.

A graduate of the prestigious JulliardSchool of the Performing Arts, he was one ofonly two students accepted that year intotheir advanced program. Prior to playing hisbest known movie role as Superman, Reeve'sstage experience was extensive, includingShakespearen roles, as well as a stint on the

soap opera, Love of Life for the CBS televi-sion network.

Reeve had always been an avid athlete —a skier, sailor, and horseback rider — the lat-ter being a passion he discovered later in hisathletic life. He approached all of these withgreat perseverance and a high standard ofperformance. This spirit would come to bearin his efforts to live fully with his impair-ments and due his utmost to influence themilieu of spinal cord injury.

The child of parents who divorced whenhe was two, Reeve had a lifelong resistance tomarital commitment, demonstrated by hisrelationship with Gae Exton with whom hehad two children but never married. Soonafter their separation in 1987 he met DanaMorosini, who was singing at a cabaret per-formance. "I went down, hook, line, andsinker," he wrote in his memoir Still Me.They married in 1992, and their son Willwas born the next year. He was two years oldon the day of the riding accident which

broke his father's neck at C-1/2 onMemorial Day, 1995.

A darling of the media for thecoincidence of his having portrayedSuperman on the big screen and hisclassic good looks, public percep-tion of Reeve quickly focused on hisefforts in support of spinal cordregeneration therapies, having madeearly statements of his intention towalk again by his 50th birthday. Yetthere was much more to Reeve andhis life post-injury than this.

Michael Manganiello, SeniorVice President for GovernmentRelations at the Christopher ReeveParalysis Foundation (CRPF) wasan intimate with the Reeves, andpart of the initial day-to-day adjust-ment process. "There were qualityof life issues the minute we got himhome," he says. "Chris slept in the diningroom for the first year, with Dana on thefloor next to him because the house wasn'taccessible," Manganiello remembers. "It was-n't like he didn't face every single thing,despite his resources, that most everybody

else with a disability faces."Raising funds for research was indeed

his initial focus, including recent congres-sional testimony in support of stem cellresearch. "To a lot of people he became theStem Cell Guy. He was way more than that,"

Christopher Reeve, 1952-2004

Continued on page 6

But more of us are united around suchissues as public accessibility, health care cov-erage, independence-based public policy,housing, and more. The Summit will be anopportunity for the various groups in theSCI community to pull together and estab-lish a shared vision. Pulling together, greaterthings can be achieved.

"Together we can achieve greatness" —a quote found on a quick web search fromsomeone in the SCI community, as it turnsout. Dr. Christopher G. Ullrich shared thissentiment during his 2000 Cervical SpineResearch Society Presidential Address,"Working Together, We Can AchieveGreatness!"

"Medtronic is pleased to co-sponsor theSummit on Spinal Cord Injury,” says DavidEtzwiler, Senior Director of the MedtronicFoundation. "It supports one of our keygoals, which is to empower consumers tobecome active partners in their health care."Medtronic has supported NSCIA since1999. "This is a chance for NSCIA tomobilize people who can reduce barriersand improve the quality of life for peopleliving with spinal cord injury and disease,"continues Etzwiler. "By bringing together

stakeholders who are focused on commongoals, we make an impact that's greater thanworking alone."

The Christopher Reeve ParalysisFoundation has taken a leadership role inuniting many disability groups throughtheir Paralysis Task Force (see page 13). Thisis an important step in the big picture of"Disability," Joe Canose, Director of theChristopher and Dana Reeve ParalysisResource Center says. "The SCI Summitaligns with our ongoing Paralysis Task Forcethat is developing a collaborative publichealth action plan across the diseases,injuries, and birth conditions that result inparalysis. NSCIA's Summit will sharpen thefocus of the SCI community on the issueswhich are being addressed in the TaskForce's public health action plan, while pur-suing their own complimentary legislativeinitiatives."

Historically, the Coordinating Councilon SCI of the late 80s, tried and failed topull the SCI community together. It wasbased on an "Association of Associations"model, requiring membership dues andfees. Past failure doesn't limit the possibili-

Continued on page 13

By John Fioriti,NSCIA Board Member

The Summit — "A conference or meet-ing of high-level leaders, usually calledto shape a program of action."Also: "The highest level or degree that

can be attained."In the milieu of spinal cord injury sup-

port and advocacy, this bar has yet to bereached. We have not attained our highestlevel of achievement in our goal to reachthe whole population and assist them inreaching their optimal quality of life. Therehave been many attempts to organize andpull together the various groups of doctors,nurses, researchers, advocates, and peoplewith SCI. The PVA organized a coordinat-ing council on SCI back in the late 80s.

NSCIA, in its commitment to help usall move closer to that goal, is hosting its

first SCI Summit, from May 9–11 inWashington, D.C. The Summit is the firststep towards a rejuvenated and empoweredfuture of deepened alliances — expandingour dialog, sharing the dream, and unitingin our efforts to share common ground.The Summit program centers on the gener-ation of a State of SCI Report Card; know-ing where we are helps us see where to go.We will also record our history through theestablishment of an SCI Hall of Fame (seepage 11), as we recognize the contributionsof those who have spent countless hours inthe achievement of spinal cord injuryawareness, research, support, and advocacy.

Some may ask, "Why have an SCISummit Meeting?" Strength in numbers;there is much more power in hearing a mil-lion voices than 10,000. There are somecompeting topics; most of us are aware ofthe longstanding debate over Care vs. Cureand the supporting arguments on each side.

SCI SummitNSCIA Brings Together SCI Community

Dana and Christopher ReevePhoto by Diana DeRosa

2 Winter 2005

3Winter 2005

SCILife is dedicated to the presentation of news con-cerning people with spinal cord injuries caused by traumaor disease.We welcome manuscripts and articles on subjects relatedto spinal cord injuries or the concerns of persons with dis-abilities for publication, and reserve the rights to accept,reject, or alter all editorial and advertising materials sub-mitted. Manuscripts and articles must be accompanied by a selfaddressed stamped envelope if return is requested. Items reviewed in New Products Announcements andadvertising published in SCILife do not imply endorse-ment of organizations, products or services.

SCILife is a publication of the National Spinal Cord Injury Association

SCILiife STAFFEEXXEECCUUTTIIVVEE EEDDIITTOORR:: Gary KarpAASSSSOOCCIIAATTEE EEDDIITTOORR:: Janine Bertram Kemp DDEESSIIGGNN AANNDD LLAAYYOOUUTT:: Nikolai AlexeevAADDVVEERRTTIISSIINNGG SSAALLEESS:: Joyce Parker DDAATTAA IINNPPUUTT:: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFEEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth DDIIRREECCTTOORR OOFF OOPPEERRAATTIIOONNSS:: Eric LarsonCCOOMMMMUUNNIICCAATTIIOONNSS DDIIRREECCTTOORR:: Janine Bertram KempRREESSOOUURRCCEE CCEENNTTEERR MMAANNAAGGEERR:: Charleene FrazierMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Daniela CastagninoMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Chae Wolterbeck

BOARD OF DIRECTORS EExxeeccuuttiivvee CCoommmmiitttteeeePPRREESSIIDDEENNTT:: Carmen D. Jones CCHHAAIIRR,, EEXXEECCUUTTIIVVEE CCOOMMMMIITTTTEEEE:: Harley Thomas VVIICCEE--PPRREESSIIDDEENNTT FFOORR CCHHAAPPTTEERRSS:: Pat Maher VVIICCEE PPRREESSIIDDEENNTT FFOORR DDEEVVEELLOOPPMMEENNTT:: Tari Susan Hartman TTRREEAASSUURREERR:: Jeffrey D. Leonard SSEECCRREETTAARRYY:: Janeen EarwoodCCEEOO//EEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth

DDiirreeccttoorrss David Boninger, Ph.D.Jack DahlbergSusan Douglas, MDJohn FioritiRichard Hollicky Gary Karp Katrine R. MayhewPaul MortensenJim Root Suzanne Wierbinski Robert Zuckerman

SCILiife PUBLISHERSPPUUBBLLIISSHHEERR:: Charles W. HaynesPPUUBBLLIISSHHEERR:: J. Charles Haynes, JD

If you have any questions related to your membership with NSCIA, orwould like to join, contact us at901 East Willetta, Suite 2306, Phoenix, AZ 85006, e-mail: membership@spinalcord.org, fax: 602.239.6268, or phone us at 602.239.5929 or toll free at 877.778.6588.

For questions not related to membership, write to: NSCIA National Office, 6701 Democracy Blvd., Ste. 300-9, Bethesda, MD 20817. Our voice phone is 301.214.4006 fax: 301.881.9817.Email us at info@spinalcord.org or go to www.spinalcord.org.

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A Real ProcessTowards Unity By Gary Karp,Executive Editor, SCILife

What a relief that the election is over.Johnson/Goldwater is the earliest oneI remember, but it seems pretty clear

that we've just been subjected to one of themost divisive andcontentious presi-dential races in ourhistory — possiblyjust short ofLincoln/Douglas inthe powder kegdays before theCivil War.

In the after-math, we've all been considering theextreme polarities revealed across the U.S.,wondering aloud whether unity was evenan option. Or whether President Bush —or anyone sitting in the White House —has the ability to achieve any degree ofrespectful political discourse, much lessagreement.

We seem to be losing the ability to listento each other. Or at least listen without look-

ing for our cue to jump in and argue. Italmost seems like we're becoming culturallyimpaired, our very genes losing the capacityto consider other perspectives with an openmind — and allow our own perspective toexpand and deepen in response.

How else do we move towards unity ofsome kind if we can't listen well? How do wecontribute our individual perspectives andinsights and experience in an environmentwhere no one really wants to hear? — that is,doesn't want to hear points of view thatchallenge our current positions and beliefs.

What's unity anyway? It certainly isn'tcomplete agreement. We will always needto co-exist as a human family where peoplehave different priorities, different self-inter-ests, different core belief systems, differentcultural histories, and different spiritualorientations. Complete agreement is surelyimpossible, but who is willing to let go ofthe hope for peaceful co-existence — or atleast meaningful cooperation amidst vali-dation of our respective truths?

Considering how we've just behaved asa nation can easily be disheartening, but asa community of people with a passionateinterest in the needs of people with spinalcord injury and their families, we alreadyhave a good start on unity. We know manythings, and are equally committed to want-ing to have an impact for the better. Weknow that someone with SCI has tremen-dous potential to live well if they can onlyget access to the resources that make it pos-sible. Sufficient rehab, mobility equipment,funding committed to independence ratherthan simply care, access to housing, trans-

portation and the public milieu in general,employment with appropriate accommo-dation as needed; the list goes on.

This is the beauty of the central themeof the upcoming SCI Summit this May inWashington, D.C. (mentioned on nearlyevery page of this issue!). We are invitingyou to join us to put together a "ReportCard on SCI." The idea is to look thewhole situation over to see where it standsrather than trying to solve things. Such anassignment can only succeed when every-one gets to have their say in a context wherewe all listen. The more the Summit can beseen as a process of getting it all out on thetable without judgment, the more we canall identify the points where we truly are inunity. The more we can learn as much aspossible from each other. And the more wecan focus our respective energies when wego back out there to make a real differencein the world of SCI.

There is so much to accomplish, andso many of us with so much to give. ThisMay in D.C., as we speak and listen toeach other, we have the chance to bringinto clearer focus an objective picture ofwhere we are at this moment in history —and heighten our clarity of where we wantto go next, as individuals and as organiza-tions. Democrats and Republicans alikewill be in the room, hopefully demon-strating that we're not as stuck in a state ofpolar opposition as the 2004 electionsseem to suggest. We have the chance totaste what it's really like to enter into aprocess towards unity with acceptance. I,for one, am excited by the prospect.

from the editor

By Marcie Roth,NSCIA Executive Director

L ast October NSCIA joined the world inmourning the death of actor, activist, andphilanthropist, Christopher Reeve. As

founder of the Christopher Reeve ParalysisF o u n d a t i o n(CRPF), he put ahuman face onspinal cord injuryand made manyunique andmeaningful con-tributions to thespinal cord injury(SCI) communi-ty. The generalpublic already

identified deeply with Chris Reeve theactor, and when he sustained a spinal cordinjury, they were able to witness a life well-lived after SCI.

With all the attention that has beenfocused on SCI due to Reeve's tragic anduntimely death, we believe his legacy willcontinue to provide many gifts to the SCIworld — not the least his desire to partnerwith us all to see us strengthen our collec-tive voice for change and progress. Those ofus with leading roles in the SCI communi-ty have the potential to come together anddelineate a unified agenda, and then com-

mit to advancing that agenda together. NSCIA is excited to facilitate just this

kind of union in the spring of 2005. OnMay 9–11, we will host the Spinal CordInjury Summit at the Mayflower Hotel inWashington, D.C. — recently remodeledwith the needs of travelers with disabilitiesin the forefront of their priorities. We'revery glad to be able to utilize this beautifuland historic facility now that accessibilityhas been integrated into their design.

Given the interest expressed from thefoundation and business communities, it'sclear that the Summit is long overdue.We've received major funding from theMedtronic Foundation and theChristopher Reeve Paralysis Foundation.Members of NSCIA's Business AdvisoryCommittee are also expressing a stronginterest in supporting this effort.

When I first came to NSCIA I broughtover 30 years of progressive leadership inthe broader disability community. WhatI've always known about making change isthat you can't do it in isolation. To createsustainable, meaningful change you have towork collectively. I've watched over theyears as people argued about such things aswhether or not finding a cure was impor-tant and whether walking is a priority.There have been debates about whetherresearch was more important than fundingcommunity-based resources. I've alwaysbelieved that there is plenty of room foreveryone's priorities and that there areplenty of resources for all, if we could onlysummon our collective power and advancea broad agenda together.

We don't all have to be on the samepage on every issue. Different groups areworking on different things. For example,NSCIA's Governing Board of Directors has

decided not to take a position on stem cellresearch whereas many of the SCI groupshave taken a position that places advancingstem cell research as an organizational pri-ority. We want to make sure that our "non-position" is clear as we seek to understandthe positions others take. We need to takecare that where we disagree, we disagreeamongst ourselves. But there remainsessential unity among us all, knowing thatthe greatest good for people with SCI isalways our shared priority.

We invite all leaders in the SCI field tojoin Summit Co-chairs Tari SusanHartman, VP NSCIA, and Mark Johnson,Director of Advocacy at Shepherd Centerin Atlanta to mobilize and maximizeprogress in all arenas that impact the SCIcommunity. We need to — and can — useour collective voice to make the substantivechanges that advance everyone's agenda —singular and shared.

The Summit will bring together leader-ship and vision as we move toward power,strength, mobilization, and the sharing ofresources. In attendance will be leadersfrom all sectors: public, private, and themedical and research communities, whocan achieve real change as we work togeth-er to maximize our collective leadershipwhile avoiding duplication of services.

Everyone stands to benefit from theSummit and its outcome. In fact, that willbe the only true measure of its success. Ourcommunity succeeds only to the extent thateveryone benefits. Once we achieve realmomentum, there will be no limit to whatwe can accomplish. Hundreds of thousandsof people need us all to get this right, andNSCIA is proud to extend our hand to allwho will join us in this effort.

4 Winter 2005

Building Our Power

from the executive director

By Janine Bertram Kemp,SCILife Associate Editor

H arley Thomas is a man with a full plateand wide-ranging responsibilities. Atthe last NSCIA Annual Meeting —

after being on the Board of Directors for twoyears — he was elected chair of the board'sExecutive Committee. In addition to a full-time career, Thomas serves on several otherboards that operate in the disability andhealth policy arenas. He credits a strong workethic as a driving force and sees employmentas crucial to post-injury living.

In his day job he is Associate Director ofHealth Policy for the Paralyzed Veterans ofAmerica, where NSCIA has its roots. PVAstarted NSCIA in 1948 to serve civilianswith SCI/D in the same way PVA had beensupporting the needs of veterans.

On the Saturday after Thanksgiving in

1982, Harley was inMexico with two otherfamilies on an annualmotorcycle trip. Hehad a pack strapped tohis back. They werecompeting to see whocould get the farthestup a huge sand dunewith a steep incline.On Harley's way downthe dune, the incline

was so steep that when he hit a clump ofgrass, he did a front over somersault andlanded with the motorcycle on top of him.The backpack broke his back.

"I'm an example of what not to do whenyou sustain a spinal cord injury," statesHarley. His accident happened in the morn-ing and he did not reach a hospital until 11p.m. that night. In the meantime, he wasmoved several times without his spine beingstabilized. As a consequence, his injury is acomplete T-5.

Harley stayed in the hospital for 30 days,was released and returned to work part timethree months later. "Rehabilitation is amust," asserts Thomas. "The hospital had noinformation and I got no counseling. Myfirst year and a half was demoralizing andfrightening. I didn't know why changes werehappening in my body. I felt like a fish out ofwater. I rigged accommodations — like

using a rope so I could sit up in bed. One daythe rope fell and I didn't have a telephonenearby. I had to just stay in bed until some-one found me."

In 1984 Thomas moved from his posi-tion of Information Technology Director at aleasing company in Irvine, California towork for an international software companyin Denver, Colorado, where he becameactive with the Mountain States Chapter ofPVA in the 1990s. In 1995, Thomas felt itwas time for another career change, so he leftthe software company to become theExecutive Director of the Mountain StatesChapter of PVA. The following year, hebegan long-distance dating with NancyStarnes, who then lived in New Jersey, and iscurrently Vice President at the NationalOrganization on Disability in Washington,D.C. When a position became available in1997 at PVA's national office, Harley took itand moved to Washington, D.C. where heand Starnes remain life partners.

"I wish I'd known about NSCIA when Ihad my accident," Harley says. "There's alarge void when it comes to finding a place toturn to for information when somethingrelated to SCI/D happens. NSCIA has agreat track record supplying accurate infor-mation in a competent, timely manner."

Thomas believes in the significant dif-ference NSCIA makes providing essentialinformation to folks on the frontline

through its Resource Center and website(www.spinalcord.org). He'd like to seeNSCIA's information in the hands of everytherapist, social worker, hospital, and reha-bilitation facility.

Thomas is looking forward to the SCISummit in Washington, D.C. on May 9–11,2005. He is one of the main organizers of

Harley Thomas: Profile of a Professional

Continued on page 13

Harley Thomas

board profile

5Winter 2005

Thankfulness and SCIBy Carmen Jones,President, NSCIA Board

November 30th marked the 18th anniver-sary of the car accident which dam-aged my spinal cord, and I became

paraplegic. Each year on that date I add tomy "ThanksgivingList," which delin-eates the manyways my life hassince beenchanged for thebetter. A fewthings that top thelist:

1. My husband Carlton and I met in col-lege. He's two years my junior. Had Inot been injured, I would have graduat-ed a year earlier and it is highly unlikelythat we would have ever met.

2. My injury has led me to my life's workas a marketing consultant who partnerswith Fortune 500 companies to marketto the disability community.

3. My whole world view is changed, andnow I take time to look beyond some-one's outer appearance and discovertheir essence.

4. I have enjoyed another year with fairlygood health, since living with SCI hasmotivated me to take better care ofmyself through exercise, eating right,and trying to minimize stress.

The list goes on. I am always humbledby my review of this list, because it seems togrow with each passing year. Who would'vethought that an "event" that initially wasunfortunate and tragic would be the cata-lyst for setting my life on a new andimproved course? Having a spinal cordinjury has not been a fate worse than death,and I'm profoundly grateful!

When November 30th rolled aroundthis year, I thought about ChristopherReeve, who passed away a little over amonth earlier. He had experienced signifi-cant health complications that ultimatelytook his life. News reports indicated that hehad a pressure sore that became severelyinfected, which led to a ripple effect andtriggered the complications that stoppedhis heart.

Upon learning how he died, Ithought, "A pressure sore can have thistype of impact?" Sure, I knew that pres-sure sores could lead to months of bedrest, skyrocketing medical bills, andunemployment — temporary or not. Ithought of all the dreams that go unful-filled while being "grounded" because ofa sore. USA Today reported that morethan one-third of people with spinal cordinjuries develop bed sores, also known aspressure sores or decubitus ulcers.

Complications from such sores kill60,000 Americans a year. That's twice thenumber of people who die from prostatecancer! About 8% of those with spinalcord injuries die from pressure sores. Thescary truth is that once an injury hasoccurred, a host of secondary conditionscan sideline individuals, rendering theminactive or unproductive.

At the National Spinal Cord InjuryAssociation, we recognize that whilemany desire the cure for paralysis, theyalso need to manage their health, advo-cate for themselves, and gain access toservices that will optimize their life in thecommunity so they can live to their fullpotential. That's why we're hosting thefirst SCI Summit, May 9–11, 2005. Bybringing together the major leaders in theSCI world, the Summit's goal is to devel-op a shared agenda and build an evermore unified voice, through which we caneven more effectively advocate for thehealthcare, research, services, and publicpolicy progress which will meet the needsof the SCI community. It is only throughunity that we can best accomplish theseessential goals.

Please join the NSCIA Board ofDirectors, the Christopher Reeve ParalysisFoundation, and the Medtronic Foundationfor this ground-breaking event. Together, wewill make the difference to maximize oppor-tunities for people living with SCI and dis-ease, so that everyone with SCI can experi-ence the blessings of their own ThanksgivingList as I do each year.

from the president news briefs

Congress Reauthorizes IDEA

The Individuals with DisabilitiesEducation Act (IDEA), which sprangfrom the Education for the

Handicapped Act first passed in 1970, hasbeen reauthorized by both houses ofCongress by substantial majorities —despite a nearly two year gap since theHouse passed its original version. PresidentBush has signed the bill into law, affectingup to 6.7 million children with specialneeds in the public school system. Thefunding commitment is for 40 percent ofcosts, estimated at $10 billion annually.The Federal government now pays only 19percent, which states and school systemshave previously had to supplement on theirown. The bill commits the government toachieving the 40 percent funding level by2011.

The first revision to the bill in sevenyears, IDEA 2004 supports earlier identifi-cation of disability and intervention withstronger enforcement of state compliance,but also includes what some advocates viewas "our children left behind" draconian dis-ciplinary provisions. For instance, the billgives schools systems more latitude indetermining a child's services. It alsoincreases the decision-making authority oflocal school districts — whereby input ofparents of children with spinal cord injuryand other disabilities will have less weightwhen determining the student's services.Many IDEA advocates see this as a signifi-cant weakening of the law's provisions,thereby diluting access to mainstream edu-cation for children with disabilities.

Bush Signs Assistive Tech Act

On October 26, 2004, PresidentGeorge W. Bush signed the AssistiveTechnology (AT) Act of 2004. This

legislation will carry on the efforts of theprevious Technology-Related AssistanceAct of 1988 which was scheduled to "sun-set" at the end of September, 2004. Thesefunds allowed every state in the U.S. tohave an AT program (see a full list atwww.resna.org/taproject/at/statecon-tacts.html) which helped foster independ-ence in the home, workplace, and com-munity. The new act eliminates the sunsetprovision, and provides for greater over-sight. The previous legislation's intent wasto establish a nationwide system. Nowthat this is essentially in place, the need, asemphasized in the bill, is to provide moredirect services to people with disabilities,including device demonstration programsand making alternative, low-cost loansavailable. An effort supported byRepublicans and Democrats alike, the Actprovides an additional $500,000 to eachstate, plus another $50,000 for advocacyactivities.

6 Winter 2005

says Manganiello. "We give away almost amillion dollars a year through our quality oflife program." Since 1999, the ChristopherReeve Paralysis Foundation has given away$5.6 million in quality of life grants.

Dana Reeve, as manager of the day-to-day logistics, conceived the grants program,which ultimately led to seeking federal fund-ing for a separate entity dedicated to qualityof life and policy efforts. The Christopher &Dana Reeve Paralysis Resource Center(PRC) opened its office in Short Hills, NJ in2002 in what Manganiello considers awatershed moment, explaining that "thePRC is exclusively geared toward transition-ing from a life without a disability to onewith a disability."

Reeve's political activism pre-dated hisadvocacy for spinal cord injury research andquality of life issues. He was a passionateenvironmentalist who, as a small planepilot, did flyovers for government officialsand journalists to survey massive forestclear cuts that were invisible from anyroads. In 1987, Reeve risked his life bytraveling to Chile, where 77 actors werethreatened with execution by the Pinochetgovernment in an attempt to purge dissi-dent voices. His participation in pressevents helped save the actors' lives.

Reeve faced many health struggles, deal-ing with an array of secondary complica-

tions such as pressure sores, osteomyelitis,pneumonia, broken bones, infections, andso on. Dr. John McDonald at WashingtonUniversity Hospital in St. Louis workedclosely with Reeve. He remembered himbeing very depressed when they first met,losing hope. "No one else wanted to dorehab with him. They thought it was a guar-anteed failure," says McDonald. "But onceyou would set a goal for him, he would doit. He became extremely motivated."

Reeve made remarkable progress work-ing with the activity-based rehab programin St. Louis after five years of no recovery atall. "He recovered from ASIA A completeto ASIA C incomplete," McDonald pointsout, referring to the American SpinalInjury Association's clinical impairmentscale. "70% sensory recovery over his entirebody. There's not a single other individualin the world who's recovered multipleASIA grades."

Reeve has deeply impacted SCIresearch by demonstrating that activity-based therapy can produce results, evenyears post-injury. "In the end," saysMcDonald, "Chris shattered the myth thata delayed recovery is impossible."

Some quarters of the disability commu-nity were uncomfortable with Reeve, feelingthat his initial emphasis on research and cure

damaged their efforts to alter the socialmodel of seeing people with disabilities inmedical terms rather than as whole peoplecapable of full social inclusion. At one of hisfirst public speeches, protesters were outsidedisplaying slogans such as "ChristopherReeve believes in cure 'em or kill 'em."Recalls CRPF’s Manganiello, "We were justcompletely taken aback. We tried to com-municate to them that none of it was mutu-ally exclusive. By virtue of the fact that Chriswas getting up and getting out of bed andgoing to work, he was setting an examplethat you could continue your life and con-tinue earning a living with a disability."

Reeve had genuine persuasive power,and not simply by virtue of his fame. "Hehad this way of carrying people throughthings so that they understand," observedDr. McDonald. "It was a combination ofcharisma and a 'can do, get rid of all obsta-cles, this is doable' attitude that was conta-gious." Democratic in his politics, he cameto realize that he needed to cross politicallines. Says Michael Manganiello, "Mostissues, Chris thought, were neitherDemocratic or Republican. They were justissues of humanity."

As passionate as he was about disabilityissues, he was a family man, first and fore-most. Says McDonald, "Chris' professional

life — he could turn it off like a switch. Hewas just like any other father. In the endthere was nothing that would have madehim more happy than to know that hewent to that hockey game that last day."

Yet he was human, and faced the kind ofchallenges one expects in the life of a venti-lator dependent quadriplegic. "He had anextremely hard life," says Manganiello."People saw him looking handsome with hisblue eyes in the wheelchair and thought,well, 'It's just about getting him into thewheelchair.' He went through emotionaltimes that could be deep and dark, but he gotthrough them fast."

The Reeves have pulled together astrong team of people working in the struc-tures of the Foundation and the PRC. Justdays after Chris' passing, Dana Reeveimmediately took on the chair of theFoundation, spoke in support of stem cellresearch on the podium with John Kerry,and she has been hands-on with theResource Center from the start.

"The momentum is strong. This will alllive way past him," says Manganiello. "Hetaught me a lot of lessons," he reflects. "Iknow it's trite and it's the title of his secondbook, but nothing really is impossible. Youjust can't give up. He never did. He neverdid 'til the day he died."

Continued from page 1

Christopher Reeve, 1952-2004

The cliché about an ounce of preventionbeing worth a pound of cure is nowheremore correct than when applied to pres-

sure sores. Pressure sores are one of the mostcommon — and serious — dangers for peo-ple with SCI. Of secondary complications,pressure sores are responsible for more andlonger hospitalizations.

SCILife spoke with Suzanne L. Groah,MD, MSPH, Director of ConsultationLiaison Service and SCI Research at theNational Rehabilitation Hospital inWashington, D.C "The most importantmessage is that nearly all pressure sores arepreventable," states Dr. Groah.

"Regular skin checks, proper seating andequipment, nutrition, and hygiene are key topreventing skin breakdown," notes Groah,advising that skin should be checked twice aday and pressure relief movement should bedone every 15 to 20 minutes. "If you moni-tor your skin regularly, you can detect pres-sure sores before the skin breaks and thentake the necessary steps to prevent them," shesays. "Look for red skin and take action. Ifyou don't know why the area is red, get intouch with a specialist. You are in the grayzone — something is starting but not reallybroken. Act quickly!"

Proper eating, cushions, and mattress areessential tools for prevention of pressuresores. If possible, see an SCI specialist at aseating clinic who can evaluate your wheel-chair and/or positioning system to minimizepressure on your sensitive areas. An optimalangle in the seat can prevent sacral sitting, ora different cushion may be more effective atdistributing pressure more evenly. Have reg-ular re-evaluations. Some clinics have theability to perform computerized mapping to

identify "hot" areas of pressure on yoursacral (base of spine), ischial (seating bones),or hip bone areas — the locations that aremost vulnerable to skin breakdown.

Depending on the level and complete-ness of your SCI, you may need a firmerback, more supports, or chest straps. It isimportant to prevent slumping which canincrease pressure on vulnerable locations.Those with higher/more complete levels ofinjury are generally at greater risk of pressuresores because they require help from some-one else to do pressure relief lifts and skininspection. If muscle spasticity is present,medication to regulate it might be recom-mended to help keep your posture stable.

"Make sure to protect your skin in all lifeactivities," says Dr. Groah. "When doing atransfer, avoid dragging or pulling your skin.Reevaluate your clothing so that there are noheavy seams, snaps, or buttons that wouldcreate excess pressure points, also taking careto prevent wrinkling at these points."

Groah also stresses good nutrition andhygiene. Anemia — often easily remedied —occurs frequently in those with new injuries,increasing skin breakdown risk since theblood does not carry as many nutrients.Drink plenty of water. Eat a balanced dietand take a multivitamin. Take further sup-plements if there are deficiencies but don'ttake too much vitamin A or zinc as that cancause problems. She cautions people withSCI to avoid smoking, alcohol, and recre-ational drugs, all of which deplete the quali-ty of your blood. Smoking decreases circula-tion and alcohol and drugs impair thinkingso one is less likely to do frequent skin checksand pressure reliefs.

Pressure Sores and the ABCs of Skin Care

Research Review Act Passes Congress

Acomponent of the ChristopherReeve Paralysis Act (CRPA) haspassed both the House and Senate

with unanimous votes. Part of a full billwith additional components that is stillpending, the Research Review Actrequires the National Institutes ofHealth to "prepare a report on how theyhave and how they will encourage theuse of multidisciplinary research teamsto advance treatments, develop new ther-apies, and collaborate on clinical trialswith respect to spinal cord injury andparalysis research," according to the ReeveFoundation web site (www.crpf.org). Thereview bill will foster the cooperation ofthe many U.S. research entities — princi-pally in university settings — workingtoward cord regeneration, pain manage-ment, spasticity control, sexual functionrestoration, among other issues thatimpact the quality of life of people withSCI/D. This is the first bill to pass theU.S. Congress specifically targeted tospinal cord injury, but it also includesprovisions lobbied for by the Crohn'sDisease community, who also are cele-brating a legislative victory.

Disability Vote TiltsTo Bush

In the three days leading up to theNovember presidential election, theNational Organization on Disability

(N.O.D.) sponsored a survey of likelyvoters with disabilities. Conducted bythe Louis Harris Organization — withwhich N.O.D. has been conductingbroad polling of the disability experiencesince 1986 — the survey found thatGeorge W. Bush was preferred overDemocratic challenger John Kerry by52.6 to 46 percent, representing a breakfrom the recent traditional Democraticleaning of the disabled population.Ralph Nader earned one percent of thedisability vote. 52 percent of voters withdisabilities showed up to the polls in2004 compared to 41 percent in 2000.N.O.D. president Alan Reich, speculat-ed that issues such as concern over terrorcould have flushed out moreRepublican-leaning disabled voters,including seniors who tend to favor theright. According to an N.O.D. pressrelease, this poll is part of a larger surveyproject studying disability voter prefer-ences, made possible by a grant from theCarnegie Corporation of New York.

news briefs

Continued on page 12

7Winter 2005

By Tari Susan Hartman,NSCIA VP of Development

Thanks to Annette Kellermann, Bank ofAmerica Accessible Banking™Program Manager and new co-chair of

NSCIA's Business Advisory Committee,Bank of America's "Higher Standards" isnot just a slogan. It's the cornerstone oftheir holistic banking approach thatembraces the diversity of customers,employees, vendors, and shareholders inthe communities they serve.

In the Beginning — The Buck Starts HereBank of America was one of the first com-panies to employ actors with disabilities intheir ads. It began twenty years ago withtheir 1983 "We Want the Job" TV com-mercial where a businessman using awheelchair rolled across the frame. Mostrecently, their "Sparring" ad featured ablind actress doing karate. Both main-

stream spots illuminated the Bank's com-panywide commitment.

Talking ATMs™, a website with built-in accessibility features, Access Loans™,raised-line and large print checks, Brailleand large print statements, and the IVRsystem for 24 hour banking by phone arejust a few of Bank of America's accessibleproducts and services. Their groundbreak-ing work has been recognized by severaldisability organizations includingDisability Rights Advocates, American

Association of People with Disabilities, andthe California Council of the Blind.

Customized SolutionsBank of America recognizes that manywheelchair users prefer not to go into thebank for simple transactions. To help meet

this need they offer many great alternativesincluding drive-thru banking, online bank-ing, and access to 16,000 ATMs nation-wide. The Bank's Access Loans offer arange of solutions to help finance almostanything including the purchase of equip-ment to make homes and cars accessible.

Giving ACCESS A Whole New MeaningUnder Kellermann's leadership, the Bankof America Accessible Banking programand their cross-functional ADA andAccessibility Business Unit Advisory Teamare driving their "holistic approach tobanking" to ensure that the needs of thedisability community are being addressed.This remains a progressive business objec-tive that permeates their corporate cultureand influences companywide decisions.Kellermann's model gives ACCESS awhole new meaning by recognizing essen-tial interconnected components to inte-grate disability/accessibility across theenterprise:

A = Associates C = CommunityC = ConsumersE = EnvironmentS = ShareholdersS = Suppliers

Recently, Kellermann presented thesebest practices at conferences such as theNational Business & Disability Council,and US Business Leadership Network.

To our knowledge, Bank of America isthe only Fortune 500 Company to saluteOctober as National Disability AwarenessMonth prominently on the homepage ofthe company's website, making a powerfulstatement that disability is an integral partof their business.

Friend to NSCIAIn addition to co-chairing the BusinessAdvisory Committee and establishing atrust fund for Ma'rwa Atheemi — the Iraqichild NSCIA brought to the U.S. for life-saving rehabilitation — Kellermann spon-sored an ad (shown below) for NSCIA toappear in the Community HealthCharities/Combined Federal Campaignannual report. The ad is expected to be seenby over one million federal employees, andis a great example of a win-win strategicalliance that illuminates the concept ofholistic banking. It also reflects a combinedeffort between Accessible Banking andMilitary Banking ("Serving those whoserve" for over 84 years).

Bank of America's "Higher Standards"raises the bar for the financial sector andCorporate America in doing business withand employing the disability community.NSCIA salutes Bank of America and ourfriend Annette Kellermann. The disabilitycommunity buck starts here.

Banking on Leadership Financial Independence is as Much AboutAccess as it is About Money™

The Community Health Charities/Combined Federal Campaign ad sponsored by Bank of America

BAC profile

8 Winter 2005

N SCIA is the first national disabilityorganization to participate in an excit-ing new market research project. The

recent annual meeting of NSCIA chapterand national leadership in Denver, COoffered the perfect laboratory for a focusgroup, where twelve qualified respondents(basis is sex, ethnicity, age, and other specif-ic qualifiers) discuss pertinent topics in arelaxed setting. A qualified moderator leadsthe group through a series of predeter-mined questions during a one to one and ahalf hour session.

Four member companies of NSCIA'sBusiness Advisory Committee (BAC) par-ticipated in the pilot project. AcordaTherapeutics, Aventis, Bank of America,and Cingular Wireless collaborated todesign a focus group survey on consumerlifestyle choices in the spinal cord injuredpopulation. Some of the information isproprietary for the participating compa-nies, and some of it is shared amongst thefour of them — or "syndicated" in marketresearch speak.

EIN SOF Communications broughtthe Nielsen National Research Group(NRG) on board. They are the premieremovie marketing research company located

in Hollywood. Their role is to gather thequantitative and qualitative marketresearch pertaining to the disability com-munity, and to help build the business casefor corporations to employ and market topeople with disabilities.

The Nielsen NRG/EIN SOF Commu-nications Disability Community MarketResearch Pilot Projects concept is simple —position annual conventions of nationaldisability organizations as a "magnet" forcorporations, that would benefit from par-ticipating in these events. These gatheringsattract thought leaders, opinion-makers,trend-setters, and key influencers of eachdisability-specific and/or cross-disabilityconstituency, and provide the ideal oppor-tunity for business to find out what makesthe disability community "tick."

The goal is to create opportunities forcorporations and disability organizationsto work together to prove to businessesthat, with increasing frequency, disabilityorganizations know how to do businesswith business. While the disability com-munity is initiating this paradigm shiftaway from a charity model toward theempowerment/consumer model, disabilityorganizations have to also change behav-

iors from just asking for a financial hand-out, to offering a fiscal handshake in theform of win-win strategic alliances that aremutually beneficial.

From Think Tank to Report Card: NSCIA isMaking the Grade

On March 24, 2004, NSCIA invitedbusiness leaders of disability-friendly com-panies to the Washington, D.C. offices ofCingular Wireless to convene a think tankstrategic planning meeting on developing aBusiness Advisory Committee. One of thekey issues most expressed by business lead-ers was the increasing need for "numbers"to help them build the business case insidetheir own companies and throughout theirindustry sectors. Less than six months later,NSCIA delivered on their request.

In Denver, on September 20, 2004,twelve male and female NSCIA chapterand/or board leaders from a mix of urbanand rural areas throughout the countryvolunteered to participate in a focus groupoffering rich qualitative insights into theSCI community mindset. A variety ofconsumer lifestyle issues were explored,such as accessibility, the Internet, qualityof life, information sharing, and willing-

ness to try new products and services.This focus group and other activities

will lay the foundation for the NSCIAReport Card scheduled to be developed atthe SCI Summit May 9–11, 2005 inWashington, D.C. The NSCIA ReportCard concept is fashioned after theEconomic Empowerment Project's FairShare Program/Economic ReciprocityInitiative (ERI) conducted by the NationalAssociation for the Advancement ofColored People (NAACP).

According to NAACP's web site, FairShare seeks to expand African American rela-tionships with corporations and ensure that afair share of dollars spent by AfricanAmerican consumers is invested back intotheir communities with jobs and businessopportunities. In 1996, NAACP launchedERI as a measuring tool of corporateAmerica's commitment to diversity andequal opportunity.

An NSCIA market research workinggroup of the BAC is being formed toexplore these possibilities. We thankAcorda Therapeutics, AOL, Aventis, Bankof America, Cingular Wireless, PrincessCruises, and other BAC members for mov-ing this Report Card concept forward —and give them an "A" for Appreciation.

If you are interested in participating infuture NSCIA focus groups and/or tele-phone or Internet surveys, please callNSCIA's resource center at 800-962-9629or e-mail us at info@spinalcord.org.

Focus on the FutureNSCIA Business Partners Gain Insight into SCI Community

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Best of all, the Saratoga Silver maintains the quality and feel andGuaranteed Accessibility that has made Saratoga the arm cycle of

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Scot, Inc. and C-5 quadriplegicgoes through his personalizedexercise regimen on his SaratogaSilver I cycle. “Twenty years ofSCI landed me in a CardiacWard! Autonomic dysreflexia andlack of exercise almost took mylife. That made us determined todesign an arm exercise cycle withall the features of the expensivecycles I had found in rehab. TheSaratoga Silver met all of ourgoals...functional, accessible, andfun to use! Exercise on a routinebasis has helped me regain mystamina and energy. I can workand play everyday now.”

9Winter 2005

10 Winter 2005

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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:

Five computers working hard so thatyou don’t have to. you have to work even harder.

The ERGYS 2 for home and clinical use is a prescribed device for C- and T-level SCI and other neurological conditions.® ©2004 Therapeutic Alliances Inc. ERGYS and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc.

Stand Today for a Healthy TomorrowYou probably stood in rehab . . .

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11Winter 2005

NSCIAHonors the Memory of

Barry Corbet1936-2004

Mountaineer,Film Maker,

Writer,former Editor ofNew Mobility.

His wisdom,support, and presencewill be deeply missed

by the entiredisability community.

Continued on page 15

Aquick Google search for "Hall of Fame"reveals a wide variety that provides asnapshot of our popular culture —

Baseball, Hockey, Country Music, Bowling,Rock and Roll, etc., etc., etc.

On May 9, 2005, the National SpinalCord Injury Association will give “Rock andRoll Hall of Fame” a whole new meaning.Picture this: The SCI Hall of Fame. Nowthat's a roll that really rocks!

This is the brainchild of Harley Thomas(see profile, page 4), NSCIA ExecutiveCommittee chair and Paralyzed Veterans ofAmerica's Associate Director, Health Policy."The SCI Hall of Fame will allow us to recog-nize individuals with SCI — or those who sig-nificantly support persons with SCI — fortheir commitments and contributions to soci-ety and the SCI community," says Thomas."Although we may be living with SCI, we arejust ordinary people, doing ordinary things,under extraordinary circumstances. For thoseof us with traumatic spinal cord injury, ourlives change in an instant. What we choose todo with the rest of our lives is up to us."

Specifically, the purpose of the Hall ofFame is to recognize individuals or organiza-tions for their dedication and significantcontributions in promoting awareness andsupport of individuals with SCI. The Hall ofFame awards — which will take place duringthe SCI Summit in Washington, D.C. — willcelebrate and reward work that's been donethus far, set a high bar for the work yet to bedone, and then support that high bar withthe collective voices of the larger community.

Eligibility for the SCI Hall Of FameNSCIA is now seeking nominations for theHall of Fame. Individuals with OR withoutSCI can be nominated for induction. Theymust have a proven track record of significantaccomplishments as a "trail-blazer" in one ofnine categories which include:

Assistive Technology — Significant contri-butions made to improve health and/or qual-ity of life for those individuals with SCIthrough adaptive design and engineering.Research — Significant contributions whichhave or will lead to development of medicaland/or scientific advancements relating to SCI,quality of life improvements, or its cure.Sports — An individual who has been a pio-neer and/or achieved excellence in wheel-chair sports.Entrepreneur — An individual who createdand operates a business providing products orservices which benefit individuals with SCI.Benefactor — An individual, group, or organ-ization that has provided significant financialsupport to the SCI community to promotequality of life issues and/or research.Legislative — An individual engaged in leg-islation on a local, county, state, or federallevel, who has made significant contributionsthrough the legislative process that has had apositive impact on the lives of individualswith SCI.Disability Awareness — An individual withSCI who has conveyed a positive disabilityimage and raised awareness in the general pub-lic through their visibility and education.Media and/or Entertainment — An individ-ual working in the media and/or entertain-

NSCIA Launches SCI Hall of Fame

12 Winter 2005

MARK YOUR CALENDARS!

May 9–11, 2005 Mayflower Hotel, Washington, D.C.

and inaugural SCI Hall of Fame

awards ceremony at theJohn F. Kennedy Centerfor the Performing Arts

Visit www.spinalcord.org

for more details.

For the NSCIA Summit on Spinal Cord Injury

Hygiene is critical. The skin must bekept clean, dry, and free of perspiration,urine, and feces. Practice careful catheriza-tion and avoid slippage, which wouldexpose the skin to bacteria that can con-tribute to skin breakdown.

"If you have a sore — depending on itsseverity and location — it might be necessaryto get off it altogether by staying out of yourchair," advises Groah. "A sore on your heelmight allow you to be up and active, but dowithout shoes for a time. A wound on a seat-ing surface might force you into bed."

But be careful of your position while onbed rest. Shear forces (friction) are a com-mon risk factor for sores. If you are semi-reclined in bed, it puts shear force on thebuttocks and sacrum. "That's worse thansitting in a wheelchair. Do not semi-recline," Dr. Groh warns. If you are on bedrest for a sacral or ischial wound, you mayneed to spend considerable time lying proneon your stomach.

Giving careful attention to skin caremakes good sense. An untreated pressuresore can become a severe health risk. But thegood news is that it never has to reach thatpoint. If you follow Dr, Groah's advice,your skin can remain healthy and free frombreakdown.

Resources for information about pressure sores:NSCIA Resource Center www.spinalcord.org/resources/

The Paralyzed Veterans of Americawww.pva.org

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Continued from page 1

Pressure Sores...

ties of the future — our country's first gov-ernment failed under the Articles ofConfederation. The time feels right to tryagain. Utilizing new tools and resourcessuch as communications technologies, it isnow easier for us all to participate as welearn from the past and create a new forumof interaction and communication.

13Winter 2005

On September 27–28, 2004 three repre-sentatives of NSCIA attended theParalysis Task Force Workshop in

Washington, D.C. sponsored by theChristopher & Dana Reeve ParalysisResource Center (PRC). ExecutiveDirector Marcie Roth, Board ExecutiveCommittee Chairman Harley Thomas, andboard member and SCILife ExecutiveEditor Gary Karp joined a national groupof advocates to lay the foundations for apolicy white paper that speaks to the needsof people with paralysis.

Participants came from a variety ofassociation, governmental, provider, andacademic settings. Joe Canose, Director ofthe Reeve PRC, and a key leader of thetask force project says, "We were delightedthat over fifty private and public organiza-tions responded to the invitation." Asidefrom NSCIA, other organizations repre-sented included Craig Hospital, Easter

Seals, the Centers for Disease Control,National Multiple Sclerosis Society,Shepherd Center, the Department ofVeterans Affairs, the Santa Clara ValleyMedical Center, the ALS Association, theNational Organization on Disability,Paralyzed Veterans of America, and theTransverse Myelitis Foundation, amongothers.

Directed by two professional facilita-tors, the participants worked in six separatebreakout groups, each with an inventedscenario of a person dealing with paralysis.Each group was asked to round out a pic-ture of the whole experience of the person,and then that profile was used to list whattheir needs would be, how they might bemet, and in what ways current policy fallsshort of making such measures available.This was the method used to reach the spe-cific goal of "Clarifying Bold Initiatives,"which fell into five categories at the end of

the meetings:

● Education● Health Care Reform● Leadership & Coordination● Systems Change — different

models for thinking about alifelong spectrum, not justfocus on survival and illness

● Translation & Implemen-tation — to close the gapbetween the lab and gettingassistive devices or treatmentdirectly to people

Jeanne Alongi, MPH, a public healthconsultant from Sacramento, California wasassigned the task of tracking all this infor-mation and putting it together into an ini-tial white paper that all participants willreview before the process moves on to thenext stage. "The meeting was a great start-

ing point," she says. "There's a lot left to do— but there's a lot of potential to impactthe general public health agenda." This sen-timent is reinforced by PRC Director,Canose, who said, "We have no doubt thatsuch wide participation in developing spe-cific public health action plans for peopleliving with paralysis will result in improve-ments at the federal and state levels."

Task Force Meets in D.C.NSCIA Represented at Reeve-Sponsored Event

By Janine Bertram Kemp,SCILife Associate Editor

W ynton Marsalis grew up in jazz land —New Orleans. Music is in his genes.His father, Ellis Marsalis, achieved

fame as a jazz pianist and several of his broth-ers are also well known in the music world.Wynton began seriously studying and play-ing trumpet at age 12, eventually attendingthe prestigious Julliard School of Music. In1980 he joined Art Blakey's Jazz Messengersand that same year signed his first solo con-

tract with Columbia Records.Marsalis, named by Time Magazine as

among the 25 most influential Americans in1996, is credited with bringing jazz to centerstage in the United States through his relent-less drive and work ethic. In 1997 he becamethe first jazz musician to win the PulitzerPrize for music with his epic oratorio on thesubject of slavery, "Blood on The Fields." Heis also a distinguished classical performer.

Thought by many to be the world's mostgifted and accomplished trumpet player andcomposer, Marsalis also knows somethingabout spinal cord injury. "My good friendClarence Adoo was a jazz trumpet playerbefore he got a spinal cord injury. Also, oneof my greatest friends used a wheelchair forhis entire life." Knowing Mr. Adoo and oth-ers with disabilities provided Marsalis withan awareness of the need to make his ownworld inclusive.

Marsalis played a partin building and openingone of the most accessiblemusic venues in theUnited States: Frederick P.Rose Hall. He is ArtisticDirector of Jazz at LincolnCenter (JALC), where hehas systematically workedfor years to institutionalizejazz in a way similar toclassical music. LastOctober, with the openingof Frederick P. Rose Hallhe witnessed the realiza-tion of one of his hardfought for dreams — afacility of its own forJALC. It is located in theTime Warner Building atColumbus Circle —prime real estate in NewYork City. The first everfacility designed specifical-ly for the acoustics of jazz,Frederick P. Rose Hall

includes three accessible performance venues:the Allen Room, the Rose Theatre, andDizzy's Club, as well as the 3,500 square footIrene Diamond Education Center.

Renowned for his mastery and art on thetrumpet, it is less known that he is theEnergizer Man — deeply involved and handson at JALC. Always working, always on thego, Wynton Marsalis is a highly organizedthinker with a huge heart and unendingdetermination. He involved himself in allaspects of the development and constructionof Frederick P. Rose Hall, including helpingto ensure that the facility would be accessibleto people with disabilities. His concern foraccess went beyond just meeting the legaland code requirements — knowing that anoptimal experience means good design, notjust compliance.

JALC's design efforts produced just thatmaximum experience for Fred Johnson andhis wife, LaVerne who has a spinal cordinjury. After attending the Jack Johnson per-formance at the Rose Theater, they wrote,"The Rose Theater is extremely accessibleand allows the wheelchair patron to be anintegral part of the audience. It is themost wheelchair accessible theater wehave been in!"

"People with disabilities have alwayscome to our concerts," says Marsalis. "Thosein wheelchairs sat down front, so we havealways been aware of them. When weplanned and built Rose Hall, we wanted tomake sure they could fully enjoy the per-formances and use all parts of the complex."

SCILife asked Wynton why people withSCI/D should look into and experience jazz?Why go to a performance at Rose Hall?

"Jazz is about freedom of the humanspirit — doing whatever you can do withwhat you have, because you improvise," heanswered. "You make up your part.Whatever you can do — do that."

When Wynton Marsalis looks at youand plays a few riffs on that trumpet, yourhuman spirit will touch the divine.

Wynton Marsalis on Access

SITTING: Harley Thomas, NSCIA, Joe Canose, PRC Director, Gary Karp,NSCIA. STANDING: Tricia Brooks and Michael Manganiello, ChristopherReeve Paralysis Foundation, Sam Maddox, PRC, and Marcie Roth, NSCIA.

Wynton Marsalis

SCI SummitContinued from page 1

NSCIA's new SCI Hall of Fame, where thefirst round of inductees will be honored at anevening event at Kennedy Center during theSummit. "It's a way for NSCIA to recognizethe achievements of people with spinal cordinjuries as well as people and organizationsthat support people with spinal cordinjuries," explains Thomas. "The Hall ofFame is a key step in NSCIA's new spirit ofgrowth. Significant contributions andachievements have been made for years inthe SCI world. It's high time we cametogether to celebrate them."

As Chair of the Executive Committee,one of his primary goals is to help NSCIAgain additional funding so the organizationcan increase its lineup of programs. Yet hislife is not all work and no play. Last year heand Starnes visited Wales and this Januarythey will take a cruise to Panama. With hisunique depth and breadth of personal andprofessional experience, Harley Thomaswill continue to make — and enjoy mak-ing — an ever greater difference in the livesof people with SCI/D.

Continued from page 4

Harley Thomas: Profile of a Professional

the arts

14 Winter 2005

By Leonard F. Zandrow,General Counsel, NSCIA

Personal injury litigation, an unwelcomebane for most everyone, is sometimes anecessary evil for persons with SCI. Such

lawsuits may provide an important means ofpaying costly medical expenses and of com-pensating injured parties for other damageswhich they have incurred due to another'sfault, providing funds that make a substantialdifference for their future quality of life.

Personal injury cases are controversial.President George W. Bush has made tortreform one of the top legislative initiativesfor his second term of office. Criticismabout the amount of money spent on claimsettlements and jury awards will likelyremain in the forefront of public discoursein the coming months. Appropriate com-pensation for injuries to a wronged plaintiffcould be impacted in the rush to limit "nui-sance" lawsuits.

How are personal injury damages deter-mined, and how should persons with SCIprepare themselves for such cases? There is

no single guideline which applies in everycase, but certain general principles apply.

First, prospective litigants should keepin mind that the vast majority of personalinjury lawsuits which are filed (over 90%nationwide) are eventually settled out ofcourt. The process of arriving at an agree-able settlement involves balancing a num-ber of factors including:

● The relative ease or difficulty in provingthe defendant's liability

● The plaintiff's attractiveness to potentialjurors

● The availability and strength of expertwitnesses

● The relative ability of counsel and theexpenses associated with their legal rep-resentation

● The amount of insurance coverage avail-able to the defendant

● The maximum amount of potentialdamages

For claims covered by insurance, adjusterstypically set aside a specific sum of money,

called a reserve, at the beginning of the liti-gation. This fund represents the insurer'sbest estimate of the case's value. Thisamount may change during the course ofthe litigation as additional facts are discov-ered or if the applicable law changes. It mayultimately be difficult to settle a claim for asum exceeding the reserve amount unlessthe plaintiff's counsel can convince theadjuster (either directly or through defensecounsel) that subsequent developmentshave increased the insurer's exposure sincethe time when the plaintiff's claim was firstbrought. It should be a highest priority toaccurately inform the insurer of its totalexposure at the outset of the claims process.

When assessing potential damages,plaintiffs' lawyers and defense counsel typi-cally reflect different perspectives, but theirapproach is essentially the same. The lawyerson both sides evaluate each of the followingfactors which potentially affect the amountof damages that may be recovered.

● Past, present and future pain and suffer-ing (both physical and emotional)

● Disability, disfigurement, and loss offunction damages

● Past, present, and future medical expenses● Past and present income loss● Future loss or impairment of earning

capacity● So-called "hedonic" or damages for loss

of enjoyment of life

Depending upon the jurisdiction involved,close family members (such as spouses,

children, and parents) may also recover fortheir losses of the plaintiff's companion-ship and affection. To assist them in theirdamage estimates, lawyers may retain theservices of medical experts, economists,vocational rehabilitation specialists, and lifecare planners.

Questions often arise, in the SCI con-text, whether plaintiffs should live theirlives any differently in order to enhancetheir prospects of a recovery. In allinstances, honesty is the best policy. Basedon my twenty years of experience in litiga-tion, the clients who do the best are thosewho cooperate fully and provide completeand accurate information. It is never in aplaintiff's best interests to exaggerate anyaspect of his or her claim.

When considering whether to return towork, plaintiffs should follow their treatingphysician's advice and recommendations.They should not deliberately refrain fromwork, rather than seeking some alternativeemployment, if they are capable. Attemptedemployment represents a win-win option. Ifthe plaintiff can successfully hold a job, he orshe will feel and be productive and happier.If unable to maintain a position, he or shewill have at least tried and will have createda more compelling case for recovering lostearning capacity damages. There is generallyno good reason to hold back from the fullliving of one's potential in the hopes ofappearing "more disabled" in pursuit of agreater award, rather than interacting withthe process responsibly to gain the best pos-sible result.

Some Strategies For Potential Tort Claimants

legal

15Winter 2005

By Laura Hershey

D aytona Beach was never my idea of adesirable vacation destination. Collegespring breaks, auto racing, a jaunt to

Disney World — no thanks, not for me.But two years ago my partner Robin

and I discovered the charms of DaytonaBeach and Central Florida in the off-sea-son. In late December there are few touristsand no revving engines ringing through theair. So what if, several days running, thetemperature on the beach was only a degreeor two warmer than back home in Denver?Most days, we had balmy weather in themid-70s. The Atlantic Ocean still flexed itspotent allure even under occasionallycloudy skies.

We stayed with friends and rented awheelchair-accessible van from RainbowWheels (800-910-VANS or www.mobili-tyfreedomvans.com) so we could visit localstate parks — and drive along the beach!Auto traffic is allowed, within reasonablespeed limits, all up and down the shoreline.(Even when the famous racetrack is desert-ed, Daytona Beach is a very car-orientedtown.) This affords wheelchair users an easyway to get close to the surf.

Hungry for a beach experience, we hadoriginally planned to borrow specially-

designed beach wheelchairs which are avail-able from the lifeguard stations run byVolusia County Beaches (disability infor-mation at volusia.org/beach/bchwhl.htm).In fact, once we got past the first stretch ofdry soft sand (thanks to some strenuouspushing from our strong buddies), and pastthe high-water mark, the sand was firmer.We found it surprisingly easy to drive ourpower wheelchairs on the wave-dampenedsand at surfside. If you've ever thought thefantasy of a romantic sunset walk on thebeach with your lover was out of reachbecause you use a chair, think again!

Daytona Beach offers some excellentchoices for completing the evening with agood dinner out. The Top of Daytonaoffers reasonably tasty American cuisinewhile affording a fabulous view from the29th story of the tallest building in town.From our table, we enjoyed a southward-looking view of Daytona Beach Shores,with the Atlantic Ocean on the left and St.John's River on the right.

If you crave a little more excitement, theDaytona Beach boardwalk features a ridecalled The Wild Thang, which is surprising-ly accessible. After Robin bought her ticket,the ride operators willingly and expertly setabout making the necessary modifications toget her up a ramp, and then up a platformlift, to a point where she could easily transfer

from her wheelchair into the seat. Never onefor dizzying heights and insane speeds, Iwatched from the ground as, after the down-swing, she was then hurled over 100 feet intothe air. At the apex, only her feet were visibleto us earthlings.

Central Florida is not all beaches andboardwalks. Many beauties of nature can befound within an easy drive from DaytonaBeach. We visited Blue Spring State Park(386-775-3663), a sanctuary for the endan-gered manatees of Florida. From the accessi-ble boardwalks and observation decks wewere able to watch these beautiful, gentlecreatures swimming in the shallow sunlitwaters of the St. John's River — includingseveral mothers nursing their babies.

Another highlight of the trip was the daywe spent at DeLeon Springs State Park (386-985-4212), about 40 minutes away fromDaytona Beach. It's where Ponce DeLeon issaid to have discovered the fountain ofyouth, and visitors can still swim in it. It evenhas a ramp. I rolled partway down the gentleslope — not far enough to get my motorswet, but enough to reach my toes into thewarm water. We took a two-hour safari tourboat ride through DeLeon Springs StatePark, where we saw a dozen alligators lurkingin dark green shadows. We also spotted innu-merable birds including osprey, snowy egrets,

red-shouldered hawks, glossy ibex, whiteherons, great blue herons, as well as a fewreally rare species including the Americanbittern and the black-hooded night osprey.Our tour boat operator maneuvered the craftto get us as close as possible to all the floraand fauna.

DeLeon Springs State Park offeredanother unexpected delight: a restaurantwhere you can make your own pancakes,right on the table! Servers bring pitchersfull of batter, along with a selection of deli-cious toppings. Pour a dollop on the grid-dle, and cook it just the way you like.

Okay, I confess; I did go to DisneyWorld. I had a good reason, though. Wemade the drive to Orlando to see an amaz-ing performance by Cirque du Soleil, theCanadian performance troupe. The gym-nasts, bicyclists, trampolinists, and trapezeartists were in fine form.

We would put Daytona Beach high onour recommended list for anyone wantingto escape the winter on wheels.

Laura Hershey is a writer, advocate, and occa-sional traveler. She is the author of SurvivalStrategies for Going Abroad: A Guide forPeople with Disabilities, (MobilityInternational USA, www.miusa.org/publica-tions/books/SS)

The Charms Of Florida In the Off-Season

ment industry who has contributed signifi-cantly to the general public's understandingand/or education about SCI.Corporate/Government Executive — Anindividual working in a large- or medium-sizeorganization who has helped to change theculture, improve accessibility, employmentopportunities, or outreach of that organiza-tion with respect to SCI as it interfaces withthe general public.

NSCIA is proud to launch this first-everSCI Hall of Fame as part of the SCISummit this spring. One person will be

honored in each category. For more infor-mation and official nomination forms visitwww.spinalcord.org.

Nomination submissions must bereceived by postal mail or submitted electron-ically at www.spinalcord.org no later thanFebruary 23, 2005 at 5:00 p.m. eastern time.Soon after, NSCIA members will be invitedto vote for inductees on the NSCIA web sitein the "members only" section (members willreceive an email reminder).

You can join forces with the SCI commu-nity and cast your vote for the very first everSCI Hall of Fame winners with a simple visitto the NSCIA web site to sign up for your freemembership. Then come dressed in your bestfinery on Monday evening, May 9, 2005 inWashington, D.C. for the gala Hall of Fameceremonies at The John F. Kennedy Centerfor the Performing Arts, to support theseinaugural nine inductees, and celebrate thewinners and superstars of the SCI world.

NSCIA Launches SCI Hall of FameContinued from page 11

travel

16 Winter 2005

CALIFORNIALeon S. Peter’s Rehabilitation CenterCommunity Medical Center FresnoContact: Ray GreenbergTelephone: 559.459.6000 ext. 5783E-mail: rgreenberg@cmc.org

CALIFORNIASt. Joseph’s General HospitalContact: Richard SherryTelephone: 707.445.8404E-mail: richbsherry@yahoo.com

FLORIDAFlorida Rehabilitation and Sports MedicineContact: Robin KohnTelephone: 407.823.2967Contact: Carl MillerTelephone: 407.623.1070

FLORIDAHEALTHSOUTHContact: Ellen Lyons-Olski, Director, PTTelephone: 321.984.4600E-mail:ellen.lyons-lski@healthsouth.com

FLORIDAHEALTHSOUTHCapital Rehabilitation HospitalContact: JoAnna Rodgers-GreenTelephone: 850.656.4800

FLORIDATampa Bay Area Support GroupHealthsouthTelephone: 800.995.8544 Telephone: 813.844.4286Fax: 813.844.4322Website: www.flspinalcord.usE-mail: info@flspinalcord.us Contact: Barry MarshallTelephone: 727.821.9131

GEORGIAColumbus SCI Support GroupContact: Ramona Cost Telephone: 706.322.9039E-mail: rvcost@mchsi.com

GEORGIAHEALTHSOUTH Central GA Rehab HospitalContact: Kathy CombsTelephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223

MARYLANDKernan Hospital SCI Support GroupContact: Lisa WilsonTelephone: 410.448.6307 Website: clubs.yahoo.com/clubs/ker-nanscisupportgroupE-mail: lmwilson123@yahoo.com

MISSISSIPPIMagnolia Coast SCI Support GroupContact: Michelle BahretTelephone: 800.721.7255 Website: www.lifeofms.com E-mail: LIFEofCentralMS@aol.com

MISSOURISouthwest Center for Independent LivingContact: Marion TrimbleTelephone: 417.886.1188 Telephone: 417.269.6829Website: www.paraquad.orgE-mail: mtrimble@swcil.org

OHIOHillside Rehabilitation HospitalContact: Mike Logan Telephone: 330.856.5861 (H)Telephone: 330.856.4303 (W)Contact: Sue JoyTelephone: 330.841.3700

PENNSYLVANIAHEALTHSOUTHRehabilitation Hospital of AltoonaTelephone: 800.873.4220

PENNSYLVANIAHEALTHSOUTHContact: Kristy Nauman, P.T., SCI Program CoordinatorTelephone: 800.695.4774 Telephone: 412.856.2584 E-mail:kristy.nauman@healthsouth.com

PENNSYLVANIADelaware Valley Spinal Cord InjuryAssociationContact: Bruce McElrathTelephone: 215.477.4946

PENNSYLVANIAMagee Rehabilitation SCI Resource & Support GroupContact: Marie Protesto Telephone: 215.587.3174 Fax: 215.568.3736Website: www.mageepeers.orgE-mail:peercoordinator@mageerehab.org

PENNSYLVANIAHEALTHSOUTH Rehabilitation Hospital of YorkContact: Lisa SchneiderTelephone: 800.752.9675 ext. 820Telephone: 717.767.6941

TEXASDallas/Ft. Worth SCI Support GroupTelephone: 972.617.7911

WEST VIRGINIAWest Virginia Mountaineer Support GroupContact: Steve HillTelephone: 304.766.4751 (W)Telephone: 304.727.4004Fax: 304.766.4849 E-mail: steveh@mail.drs.state.wv.us

If you cannot find a chapter or supportgroup in your area, why not start yourown? Contact the National Office for assis-tance on our business line 301.214.4006or our Helpline: 800.962.9629.

ARIZONAArizona United Spinal Cord InjuryAssociationContact: Paul MortensonTelephone: 602.239.5929 Telephone: 877.778.6588Fax: 602.239.6268Website: www.azspinal.orgE-mail: info@azspinal.org

CALIFORNIALos Angeles Chapter, NSCIAContact: Paul Berns, M.D.Telephone: 310.553.4833Fax: 310.230.0999E-mail: peers@westworld.com

CALIFORNIAWYNGS, NSCIAContact: Michele AltamiranoTelephone: 818.267.3031 Fax: 818.267.3095Website: www.wyngs.orgE-mail: wyngs4sci@msn.com

CONNECTICUTConnecticut Chapter, NSCIAContact: Bill Mancini, PresidentTelephone: 203.284.1045Website: www.sciact.org E-mail: nscia@sciact.org

DISTRICT OF COLUMBIASCI Network of MetropolitanWashington, NSCIAContact: Steven Towle, Don WoodruffTelephone: 301.424.8335Fax: 301.424.8858Website: www.spinalcordinjury.netE-mail: stevetowle@cs.com

FLORIDAFLSCIA, Spinal Cord Support Groupof Collier County, Inc.Contact: Mindy Adaspe, RN, BSN/ PresidentTelephone: (239) 825-9999Website:www.naples.net/presents/spinalcordEmail: purposeNmission@aol.com

ILLINOISSpinal Cord Injury Association of Illinois Contact: Mercedes RauenTelephone: 708.352.6223Fax: 708.352.9065Website: www.sci-illinois.orgE-mail: spinalcordinjury@sbcglobal.net

INDIANACalumet Region Chapter, NSCIAContact: Lucille HightowerTelephone: 219.944.8037Contact: Rita Renae JacksonEmail: rjackson@ci.gary.in.us

KENTUCKYDerby City Area Chapter, NSCIAContact: David Allgood, PresidentTelephone: 502.589.6620E-mail: dallgood@calky.org

MASSACHUSETTSGreater Boston Chapter, NSCIAHEALTHSOUTH, Contact: Kevin Gibson- ChapterCoordinator Telephone: 781.933.8666 Fax: 781.933.0043Website: www.sciboston.com E-mail: sciboston@aol.com

NEW HAMPSHIRENew Hampshire Chapter, NSCIAContact: Lisa Thompson, PresidentTelephone: 603.479.0560 Fax: 928.438.9607Website: www.nhspinal.orgE-mail: lthompson@nhspinal.org

NEW YORKNew York City Chapter, NSCIA Contact: James CesarioTelephone: 212.659.9369 Fax: 212.348.5902E-mail: nycscia@yahoo.comContact: John MoynihanTelephone: 914.969.7257 (H)Telephone: 914.325.3059 (C)

NEW YORKGreater Rochester Area Chapter,NSCIAContact: Karen GenettTelephone: 585.275.6097Contact: Kathy FlannaganTelephone: 585.275.6347

NORTH CAROLINANCSCIAContact: Deborah Myers Telephone: 919.350.4172E-mail: dmyers8@triad.rr.comContact: Karen Vasquez E-mail: kvasquez@wakemed.org

OHIONorthwest Ohio Chapter, NSCIAContact: Debra Ostrander, TreasurerTelephone: 419.872.5347Website: www.spinalrap.org E-mail: nwonscia@hotmail.com

SOUTH CAROLINANSCIA South Carolina ChapterTelephone: 866.445.5509 Toll free: 803.252.2198Fax: 803.376.4156Website: www.scscia.org

TEXASRio Grand Chapter, NSCIAContact: Sukie Armendariz, Ron PrietoTelephone: 915.532.3004E-mail: Riograndenscia@aol.com

VIRGINIAOld Dominion Chapter, NSCIAContact: Shawn FloydTelephone: 804.726.4990E-mail: whlbound@comcast.net

WISCONSINNSCIA Greater Milwaukee AreaChapter Contact: John Dziewa, PresidentTelephone: 414.384.4022 Fax: 414.384.7820Website: www.nsciagmac.orgE-mail: nsciagmacwi@aol.com

For information on how to start anNSCIA Chapter or Support Group, con-tact Vice President for Chapters, PatMaher at pmaher@abilitylinks.org or630.462.4529.

NSCIA CHAPTER NETWORK

NSCIA SUPPORT GROUP NETWORK

THE NSCIATHE NSCIARESOURCE RESOURCE

CENTERCENTER

We provide customized, personal-ized telephone support for any ques-tion you have regarding spinal cordinjury.

Our staff — which includes an SCIregistered nurse — draws from awide range of informationresources, and is able to serveSpanish-speaking callers.

We will gladly provide written mate-rials to those without Internet access.

We can help you with:Seeking local resources

NSCIA chapter and support group locationsNon-NSCIA sources of support

Locating rehabilitation facilitiesFunding information and

insurance guidelinesRelevant web sites

Families with new injuries are giventop priority.

Toll free 800.962.9629Weekdays 8:30 a.m. to 5:00 p.m.

Eastern Timeinfo@spinalcord.orgHablamos español

By Suzanne L. Groah, MD, MSPH

Osteoporosis is a condition in which bonemass (or bone mineral density) decreases.The term "osteo" means bone and "poro-

sis" means spongy, which is just how osteo-porotic bone looks on the inside. Osteoporosisoccurs in almost everyone during the agingprocess. Osteoporotic bones tend to be weakeror brittle (due to the larger than normal holes),and they are more prone to break.

Risk factors for osteoporosis include:

● Sedentary lifestyle● Being thin● Poor nutrition● Diabetes● Smoking● Low levels of dietary vitamin D and calcium● Being light-skinned or fair-haired● Excessive alcohol or caffeine use

Spinal cord injury is also a significant riskfactor for osteoporosis. Immediately after SCI,we know that bone resorption — or breakdown— begins to occur within days. Calcium thatwas originally in the bone is resorbed, orremoved from the bone. It travels in the bloodand then leaves the body in the urine. Althoughthis bone loss does not appear in X-rays formonths, we are able to confirm that the boneloss is occurring by measuring the calcium andother chemicals released during bone break-down which appear in the blood and urineshortly after injury. This bone loss is greatest inthe first 3–12 months after injury, but still per-sists for several years. Regardless of one's agewith an SCI, there is likely to be some degree ofosteoporosis.

Just because someone has osteoporosis,doesn't mean they'll experience a broken bone.Only about 6% of people with SCI have brit-tle bone-related fractures. That may seem like alot, but statistically the odds are still in theirfavor. Broken bones due to osteoporosis typi-cally occur in the legs, usually around the knee,and occur with activities or movement thatotherwise wouldn't cause a broken bone. Manypeople have reported breaking a bone in theirleg during range of motion activities (such asstretching), after a minor fall, or even after asignificant spasm.

Although we don't fully understand whatcauses osteoporosis, we do know that activity

— or the lack thereof — plays a role. Duringexercise, muscle pulls on bone, which helpsbone become stronger. After SCI, the musclesaffected by the paralysis are no longer able topull on the bones to keep them strong. As aresult, bone loss is more likely in the areas ofparalysis.

For example, with paraplegia the bones inone's arms are probably stronger than thebones in the legs. Even the bones in the spineare kept strong to maintain your posture whensitting. With tetraplegia (or "quadriplegia"),bone mass is lost in the legs, and possibly in thearms and spine as well.

We can't cure osteoporosis. While we areworking toward developing therapies and med-icines that help prevent osteoporosis, wehaven't found good treatments to restore bonemass that has already been lost. The best adviceis to do everything in your power to preventfurther bone loss. You can:

● Stop smoking.● Limit alcohol and caffeine intake.● Get moving with physical activity and/or

exercise.● Check with your doctor about the use of

estrogen supplementation if you are a post-menopausal woman.

● Eat a healthy and balanced diet, includingthe recommended amounts of calcium (indairy products such as milk and cheese, andin shellfish and beans) found in dairypruducts.

● Get vitamin D from being out in the sun orthrough sources in your diet such as vitaminD fortified milk, eggs, fatty fish and fishoils, and green leafy vegetables, or vitaminsupplements.

A doctor can check the degree of osteo-porosis using special X-rays such as DEXA orCAT scans, and then review the risk factorsabove to consider how best to decrease the risk.Someone considering starting some type ofnew therapy, physical activity, or exercise pro-gram — especially one that involves standingor walking — should discuss the risk of osteo-porosis with his or her doctor first.

While osteoporosis is an unavoidableaspect of the SCI experience, it is a naturalpart of our lives as we age, and there are stillmeaningful measures you can take to lessenits effects on your bones.

Dr. Groah is the Director of SCI Research atthe National Rehabilitation Hospital inWashington, D.C.

17Winter 2005

Name

Street

City, State, Zip Phone

E-mail (very important, if available)

NSCIA Member Services901 East Willetta, Suite 2306

Phoenix, AZ 85006 Phone (602) 239-5929

Toll free (877) 778-6588Fax (602) 239-6268

e-mail: membership@spinalcord.org 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, theirrelated service providers, policy makers, organizations, hos-pitals and others interested in the issues affecting the spinalcord injury community. Our Mission is to enable peoplewith spinal cord injuries, diseases and dysfunction toachieve their highest level of independence, health and per-sonal fulfillment by providing resources, services and peersupport.

Become a Member Today. It’s Free!

JOIN OUR GROWING NATIONAL FORCEFOR CHANGE

PPlleeaassee cchheecckk mmeemmbbeerrsshhiipp lleevveell::

THE NATIONAL SPINAL CORD INJURY ASSOCIATION

✂cut out & return

I am interested in supporting NSCIA with:

■ Gifts of stocks or mutual funds

■ Gifts of real estate

■ Including NSCIA in my will

■ Check Enclosed■ Credit Card (Visa, Mastercard, Amer. Exp.)

Name on cardCredit Card #Expiration Date

My donation is $

■ Individual with SCI/D ■ Family member ■ Individual SCI Service Provider ■ Professional■ International (US Funds only)■ Silver (Org/Hosp, budget less than $1 million).■ Gold (Org/Hosp, budget greater than $1 million).■ Platinum (Org/Hosp, budget greater than $5 million)

FREE!FREE!FREE!$100.00$100.00$250.00$500.00$1000.00

N SCIA has received two grants in sup-port of developing and hosting theSCI Summit in the spring of 2005.

The Christopher Reeve ParalysisFoundation (CRPF) and the MedtronicFoundation have both given generously.NSCIA is proud of our meaningful partner-ship with each of these fine foundations.

The Christopher Reeve ParalysisFoundation (CRPF) vigorously works toimprove the quality of life for people livingwith disabilities through its grants program,Paralysis Resource Center, and advocacyefforts. CRPF is also committed to fundingresearch towards the development of treat-ments and cures for paralysis caused byspinal cord injury and other central nervoussystem disorders. NSCIA received the SCISummit funding through CRPF's Qualityof Life Grants program.

The Minneapolis-based MedtronicFoundation has long been a committedpartner with NSCIA. The Foundation man-ages the Medtronic Company's givingefforts dedicated to improving the health ofpeople with chronic disease, educatingfuture generations of scientific innovators,and enhancing communities where they liveand work. Their top priority is to programsserving socially and economically disadvan-taged people.

CRPF and the Medtronic Foundationunderstand and support the need to buildunity among the many various players inthe SCI community. There exists both a

shared need and a real disconnect amongthe many groups who serve the SCI popula-tion. The old adage about the value of ourwhole being greater than the sum of ourparts rings very true. In order to advance thequality of life and opportunities for the SCIpopulation, Medtronic Foundation andCRPF have partnered with NSCIA to putthis belief into action by strongly support-ing the first "Summit on Spinal CordInjury" to be held May 9–11, 2005 at theMayflower Hotel in Washington, D.C.

The grants support bringing together200 stakeholders in the SCI community;those with SCI, families, researchers,healthcare and other advocates, service andproduct providers, and all who share a com-mitment to maximizing the quality of lifefor people with SCI.

CRPF and Medtronic Foundationmonies will specifically support develop-ment of both the SCI Summit and the SCIHall of Fame.

NSCIA is also working with ourBusiness Advisory Committee to inviteadditional partnership and sponsorship ofthe SCI Summit and SCI Hall of Fameevents. Several levels of participation areavailable and tailored to provide individual-ized value to the partner or sponsoringorganization. Please contact Eric Larson,NSCIA Chief Operating Officer at elar-son75@spinalcord.org to discuss involve-ment in these exciting events.

NSCIA Receives Summit Seed Gifts

callahan

Boning Up on Health

By Joshua George

Against the roar of 72,000 fans, 3,837 ath-letes from 86 countries paraded intoAthens Olympic Stadium, greeted by an

enormous tree symbolizing life and strength.The 12th Paralympic Games were officiallyunderway, the largest Games to date, the sec-ond largest competition in the world, and thefirst Paralympics to be organized by the sameorganizing committee as the OlympicGames.

The opening ceremonies launched intoan elaborate series of dances and music sym-

bolizing earth, wind, water, and fire — theelements of life. The Paralympic torch atopthe stadium was sparked by a chain reactionof fireworks in a dramatic conclusion to thenight's festivities.

U-S-A, U-S-A, U-S-AOn the first day of competition the tan-

dem cycling duo of Karissa Whitsell and pilotKatie Compton won silver in the 1 km timetrial to take home the first medal for theAmericans. The United States ranked fourthin total medals won with 88 — including 39gold — after China with 141, Australia with100, and Great Britain with 94.

Erin Popovich was the biggestAmerican contributor to the gold pot,leading the U.S. swim team with sevengold medals in five individual events andtwo relays. She broke three worldrecords and five Paralympic records. TheU.S. swim team amassed 35 medals infront of sold out crowds at one of theAthens Games most popular events,39.8% of the U.S. medal count.

Returning to its historical birth-place as a sport, track and field drew acrowd of raucous schoolchildren andracing fans. The very architectural beau-ty of the stadium evoked a sense ofspeed. The fields in the wheelchair rac-ing and ambulatory racing events weredeeper and faster than ever before,proven by the 139 new world recordsachieved. The U.S. Men's WheelchairRacing team got off to a slow start, win-ning no medals until Adam Bleakneyand myself won one silver and twobronze medals, respectively. Thewomen came along to pick up the slack;Cheri Blauwet went on a medal binge,pulling a bronze in the open 5000meters, then cruising away with a goldin the 800 meters before taking another

bronze in the marathon. TatyanaMcFadden, just 15 at her firstParalympics, took home a silverin the 100 meters and a bronze inthe 200 meters.

It wasn't just the U.S. wheel-chair racers who brought homethe medals in Olympic Stadium.Amputee runner DannyAndrews had a very successfulmeet winning the 400 metersprint in world record time, lead-ing off the gold medal-winning4x400 meter relay team, whobeat the previous world record byfive seconds at 3:27.

After a disappointing opening game lossto the Australians, the U.S. Women'sBasketball team buzz-sawed through thecompetition beating Canada in the semifinalsand earning a rematch with Australia in thegold medal game. Seeking revenge, the U.S.took off to a roaring start, with crisp offenseand fierce, aggressive defense to cruise to a 56-44 victory and gold medals to go around.

Notable HappeningsThe Athens Games was one of new

beginnings. Some nations — such as Iraq andAfghanistan — sent teams to the ParalympicGames for the first time. China showed theworld that they had become a force to bereckoned with, bringing the largest team tothe Games and accumulating a second-ranked 63 gold medals while also being num-ber two overall in medals.

Handcycling made its first Paralympicappearance, recognized as a medal sport forthe first time. With two classifications, thehandcycling division offered an open roadrace and a time trial event. Alejandro Alborbrought home the lone handcycling medalfor the U.S. with a silver time trial event.

Athens also demonstrated how greatly theoverall performance of the athletes hasincreased. Over 200 world records were bro-ken in swimming, track, and cycling. Athleteswho had been good before were now simplyamazing. At least that's what 35-year-oldChantal Petitclerc of Canada did; she hadbeen known as one of the world's top wheel-chair racers before Athens. This year, her five

gold medals and three world records was a yetmore impressive performance.

Tragedy At The GamesFor all the excitement of the Games the

final weekend took place against the back-drop of a somber mood after a schoolbusfilled with high school seniors on a trip tosee the Parlympics finale crashed. Seven stu-dents were killed, and 30 more injured.Many Greeks expressed the particular depthof their sorrow saying that since Greece is asmall country, an accident of this magni-tude has a much more powerful effect. Thestudents were recognized with a moment ofsilence during the events scheduled for the27th of September, and by the reschedulingof the Closing Ceremonies to the next day.

Going HomeAt the end of a long stay in Athens the

U.S. team left feeling tired and hungry (thefood in the cafeteria left something to bedesired). Two days, many technical difficultieswith planes and flight schedules, and hun-dreds of Big Macs later, the U.S. team finallymade it back to their homes to tell stories ofGreek glory to those who couldn't be there,and who did not get the chance to witnessthem due to a total blackout in the Americanmedia. We are truly proud of what we accom-plished and are hopeful for the continuedgrowth and recognition of the Paralympicmovement.

Josh George, T-6/7, is a two-timeParalympic bronze medalist in wheelchair rac-ing and a student at the University of Illinois.

18 Winter 2005

Athens 2004 Paralypmics Report

U.S. Women's Basketball in Athens

When you first approach a Job Developer,it is important to go in with a focus. ChrisFigone, a person who is short-statured, advis-es jobseekers to come in with a few jobdescriptions printed out to show the JobDeveloper examples of what they're lookingfor and what they feel would be a good matchwith their skills. Figone, who is searching forwork as a Business and/or Process Analyst,describes using a Job Developer as if you werea foreman — the Job Developer works foryou. "You have to drive your job search, butit doesn't hurt to have an extra tool to helpyou," said Figone. He has been working forthe past five months with Project Hired, anonprofit organization in San Jose, Californiathat strives to meet the hiring needs ofemployers, and the employment needs of job-seekers with disabilities.

The Job Developer will sit down with youto review your background and skills, neces-sary to their ability to make a good matchbetween a job and your qualifications. Afterthe initial relationship is established, you andyour Job Developer should communicate atleast once a week to continue the evaluation

of your job search plan. Figone also recom-mends this as a way of remaining on the JobDeveloper's mind. "New clients come inevery week," he says, "so in order to remain apriority on the Job Developer's list, you needto maintain a presence."

Using a Job Developer can help youkeep motivated and provide you with per-spective and networking advantages. Figonesaid that he often uses his Job Developer tobounce ideas off of and to help him under-stand the employer's perspective to betterprepare him for interviews. In addition, hisJob Developer can connect him to contactswithin companies he would like to target,and if he does not have a current contact, hecan advocate on Figone's behalf. Advocacyis another piece of job development.

Troy Henry, a Job Developer for fouryears with Project Hired, has witnessed thefear that employers feel when dealing with ortalking about a person with a disability. As anadvocate, Henry transforms the attitudes ofemployers by having them see his clients aspeople first; to see the person not for their dis-ability, but for their abilities.

By Pauline Aughe

The unemployment rate among peoplewith disabilities is approximately 70%.Among those people who are unem-

ployed, two-thirds want to work. How arethese millions of under-utilized people goingto make their way into the workforce?

As the Disability Program Navigator atthe CONNECT! Job Seeker Center, aOne-Stop Career Center in Sunnyvale,California, my job is to do outreach andcommunicate with job seekers with disabil-ities. I help them navigate the complex pro-visions of the various programs through

which a jobseeker can gain, return to, orretain employment. To put it more simply,I advise them where to start in this vastworld of employment.

There are many factors that contributeto the complexity of finding any job, butespecially for individuals with disabilities.Attitudinal barriers still plague the work-place, also peppered with accessibilityissues. According to the 2003 EmployersSurvey done by the Rutgers UniversityHeldrich Center for WorkforceDevelopment, 25% of employers citedthese barriers to hiring individuals with dis-abilities:

● Discomfort with interacting with them● Concern regarding the cost of

accommodations● Fear of litigation under the Americans

with Disabilities Act

Searching for a job cannot be donemost effectively on your own. A JobDeveloper is one of the best resources job-seekers can use for support and guidance.

Working With a Job Developer

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