scilife, vol. 3, no. 1

www.spinalcord.org

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

Vol. 3, No. 1January/February 2006

By John F. Fioriti,NSCIA Board Member

Imagine your child having a C5 injury.Wouldn’t you do everything withinyour power to help them? Dr. Joseph

Giambrone Ph.D., a professor in microbi-ology, has a son in this circumstance, sohe set upon a quest to find the best treat-ment for him. He took his son for surgeryin 2001 to Dr. Carl Kao in Quito,Ecuador, who performs surgery in whichhe transplants sural nerve tissue from theleg — which is presumed to bringSchwann cells to the area for both cordregeneration as well as remyelination —and omentum tissue from the abdomento increase blood flow to the spinal cord.Results were minimal.

Then they went to China to see Dr.Hongyun Huang, professor and chief neu-rosurgeon, Chaoyang Hospital, Beijing.Dr. Huang transplants fetal olfactory

ensheathing cells fromthe nose into damagedareas of the spinal cord.Results there were alsominimal. Although thefunctional returns areminimal with some wristand finger motion, thealternating hands-onmanual therapy andintensive PT have helpedhim look and feel morelike a healthy young manwith increased muscletone, upper bodystrength, lung capacity,and hot-cold sensation.

After two offshoreprocedures backed by agood insurance policy,they are hoping the nextgeneration will providethe answers they are look-

Going Offshore in the Quest for CureThe World Wide Web of SCI Research

Continued on page 8

By Jennifer French

T echnology. Look around and it’s every-where, woven throughout our everydaylives. Those with SCI and other impair-

ments are some of the first to benefit fromwhat NeuroInsights reports as “the largestuntapped medical market” in the area ofneurotechnology — the use of medicalelectronics to restore or improve the humannervous system.

Neurotech may conjure up thoughts ofsci-fi Cyborgs or the bionic woman. It’s notthat exotic, but real, applicable engineeringand design. And it’s come a long way inrecent history; components have shrunk,electronics improved, and we, as a society,are more accepting of placing technologyinto our bodies.

Here’s a peek at a few very earlyresearch advances being developed and

tested in clinics andlabs around thecountry. They maynot be the end prod-uct that will eventu-ally be available to us,but the feedbackfrom research partici-pants today is shap-ing the technology oftomorrow.

Going WirelessThe wireless world nowtaking us by storm isemerging in medicaldevices. FunctionalElectrical Stimulation(FES) systems havetypically involved acomplex array of wires.Some wires wereattached to a controldevice, as in surface

New in Neurotech

Legislation AddressesEmergency Preparedness

NSCIA Hall of Fame honoreeSenator Tom Harkin, Democratfrom Iowa has introduced the

Emergency Preparedness and Responsefor Individuals with Disabilities Act of2005, S. 2124.

After the serious gaps in planningand services for people with disabilitiesrevealed in the aftermath of hurricanesKatrina and Rita in the U.S. GulfCoast, (see cover story, Nov./Dec.SCILife), the bill would establish aDisability Coordinator in the U.S.Department of Homeland Security,with a direct reporting relationship tothe Secretary.

The bill is also designed to “directlyincrease the accessibility of replacementhousing built with Federal funds.”Temporary shelters were widely inacces-sible without basic services and suppliesneeded by evacuees with disabilities,some people finding themselves forcedinto nursing care facilities. The lan-guage in the bill specifically directsFederal emergency assistance personnelto ensure that individuals with disabili-ties “who were living independentlybefore evacuating their homes areoffered housing alternatives with com-parable independence.”

In a related effort, the PetsEvacuation and TransportationStandards Act (PETS Act), H.R. 3858has been introduced in the U.S. Houseof Representatives, expected soon to beintroduced in the Senate. People withdisabilities had left behind service ani-mals — either required to do so byemergency personnel, or with no ideathat they would not be returning soonafter the storm due to extreme winddamage and the severe flooding thatoccurred. PETS will require state andlocal authorities to address the issue ofevacuating people with pets from disas-ter areas.

Continued on page 17

The BrainGate interface in the lab. Photo, © Rick Friedman.

news briefs

2 January/February 2006

3January/February 2006

SCILife is dedicated to the presentation of news concerningpeople with spinal cord injuries caused by trauma or disease.We welcome manuscripts and articles on subjects related tospinal cord injuries or the concerns of persons with disabilitiesfor publication, and reserve the rights to accept, reject, or alterall editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a selfaddressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertis-ing published in SCILife do not imply endorsement of organiza-tions, products or services.

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SCILife STAFFEEXXEECCUUTTIIVVEE EEDDIITTOORR:: Gary KarpDDEESSIIGGNN AANNDD LLAAYYOOUUTT:: Nikolai AlexeevAADDVVEERRTTIISSIINNGG SSAALLEESS:: Joyce Parker DDAATTAA IINNPPUUTT:: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFCCHHIIEEFF EEXXEECCUUTTIIVVEE OOFFFFIICCEERR:: Marcie Roth CCHHIIEEFF OOPPEERRAATTIINNGG OOFFFFIICCEERR:: Eric LarsonRREESSOOUURRCCEE CCEENNTTEERR MMAANNAAGGEERR:: Bill FertigDDEEVVEELLOOPPMMEENNTT AASSSSOOCCIIAATTEE:: Deanna AckermanRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Daniela CastagninoRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Downey HinrichsRREESSOOUURRCCEE CCEENNTTEERR AASSSSOOCCIIAATTEE:: Charleene FrazierWWEEBB SSEERRVVIICCEESS//PPUUBBLLIISSHHIINNGG:: J. Charles Haynes, JDWWEEBBMMAASSTTEERR: Nikolai Alexeev

BOARD OF DIRECTORS EExxeeccuuttiivvee CCoommmmiitttteeeePPRREESSIIDDEENNTT:: Harley ThomasCCHHAAIIRR,, EEXXEECCUUTTIIVVEE CCOOMMMMIITTTTEEEE:: Janeen EarwoodVVIICCEE--PPRREESSIIDDEENNTT FFOORR MMEEMMBBEERRSSHHIIPP:: Pat MaherVVIICCEE--PPRREESSIIDDEENNTT FFOORR CCHHAAPPTTEERRSS:: Shawn FloydVVIICCEE--PPRREESSIIDDEENNTT FFOORR DDEEVVEELLOOPPMMEENNTT:: John FioritiVVIICCEE--PPRREESSIIDDEENNTT FFOORR CCOOMMMMUUNNIICCAATTIIOONNSS:: Dana W. Matthews,SciD, JD, MBATTRREEAASSUURREERR:: Jeff LeonardSSEECCRREETTAARRYY:: Susan Douglas, MDBBUUSSIINNEESSSS AADDVVIISSOORRYY CCOOMMMMIITTTTEEEE LLIIAAIISSOONN:: Tari Susan Hartman-SquireCCEEOO//EEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth

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Walk Again?Well, It Depends

By Gary Karp,Executive Editor, SCILife

Following the onset of a spinal cordinjury or disease, it is entirely naturalto anxiously seek information on the

status of spinal cord research. The walk-ing person suddenly in a non-walkingbody hopes to learn that some kind of

therapy exists, orwill soon emerge.

We typicallythink of illness orinjury as some-thing we recoverfrom, rather thanbeing a new normaround which onemust make per-

manent adjustments. Getting back to“normal” is the first — and very strong —impulse, so of course exploring SCIresearch would be a high priority.

The higher the level of injury, thehigher the priority. It always made senseto me that Christopher Reeve putresearch at the top of his list. When you’rethat impaired, you’re going to want to dowhatever you can to help the cause ofcure. Likewise for Marc Buoniconti,

fundraiser extraordinaire for the MiamiProject to Cure Paralysis, another highprofile character in the high quad catego-ry who has cause to be thus driven.

For some of us with paraplegia, theimpulse to focus on cure is less overarching.When you’ve got full use of your arms andcan breathe on your own, able to functionwith a significant degree of independence,your focus goes more to active living. Thedrive to be healed holds less sway — onceyou’re through the initial stages of emo-tional adjustment, at least.

To those at the beginning of the experi-ence, regardless of injury level, the notion ofresearch dropping down the priority stackprobably seems hard to fathom. But in factthere is a wide continuum throughout ourcommunity on this question. Some aredevoted to doing whatever they possibly canto help the SCI science and business commu-nities crank out a cure. Others are not.

Date of onset also informs these atti-tudes. My paraplegia occurred in 1973, at atime when there was little if any expecta-tion that a therapy would appear in ourlifetime. Much as I wanted dearly to walkagain, even the briefest review of the statusof regeneration research quickly led me toan undeniable conclusion: get on withwhat I have, for lack of any other choicebut death — real or virtual.

Meanwhile I’ve gladly thrown whatmoney I could the way of the scientists,who I knew would happily look away fromtheir microscopes long enough to endorsemy checks.

Hearing the far more optimistic chants ofthe present-day cure community, those withmore recent onset face the temptation ofinvesting their time and energy in hoping —

or waiting — for a purportedly soon-to-come therapy. Some are working at staying asstretched and strong as possible for the day oftheir treatment; a good thing. Optimizinghealth is the only way anyone will benefitfrom an SCI therapy in any case.

Now that I’ve turned 51, my orientationto a potential cure is shifting further. Myremaining time on the earth is getting short-er, and I intend to choose what I do with itvery carefully. The hours of rehab and thera-py it would surely demand for me to walkagain — a process that is unlikely to evenbegin until I’m in my sixties — might not bewhat I’d choose. I have quite a long list ofother things yet to do in my lifetime. It alsofeels right to defer to younger people withSCI who would have many more years ofwalking ahead of them than I.

Besides, I’ve done pretty well on wheels.Walking is just not first on my list — wellbelow the restoration of certain sensations Ideeply miss, and a desire to ensure protectionfrom skin breakdown, bladder cancer, heartdisease, and other health issues with a greaterincidence in people with SCI as we age.

In other words, walking is not the onlyconcern of SCI research, the theme of thisissue. We consider pain, technology, yourrights in clinical trials, and data whichshows how our spending power is havingbroader impact on our society. We alsooffer a cautionary article on therapies cur-rently offered which we fear could be pre-mature — and therefore risky.

“The Cure” seems inevitably on the way.In the meantime, nothing is more importantthan living our lives to the fullest in eachmoment, taking pride in who and what weare now as we wheel our way down any of themany beckoning paths of our choice.

from the editor

By Melinda Neri

Thanks to improved medical managementand technologies, individuals with spinalcord injury (SCI) are now living decades

longer, with survival rates beginning toapproach the non-disabled general popula-tion. At the same time, it has been well-doc-umented that chronic secondary conditionsoccur more frequently and at an earlier age inindividuals with SCI. This combination ofgreater longevity with heightened risk of sec-ondary conditions has contributed to acceler-ated aging in SCI.

To address some of the secondary con-ditions commonly experienced by indi-viduals aging with SCI, theRehabilitation Research and TrainingCenter (RRTC) on SCI at the NationalRehabilitation Hospital in Washington,D.C. is currently involved in research andtraining projects in an effort to promotehealth and prevent complications. ThisRRTC seeks to gain new knowledge andimplement innovative practices to reducethe risk and foster prevention for a widevariety of secondary conditions, such ascardiovascular disease (CVD) and osteo-porosis which severely compromise the

well-being and inde-pendence of individualswith SCI. In addition,the RRTC is also con-ducting research onother secondary condi-tions such as decubitusulcers, respiratory com-

plications, pain, and depression.One project in particular is seeking to

identify specific interventions that canmitigate the risk for CVD. This currentresearch will gather the knowledge ofCVD risk among people with SCI, andprovide the first systematic examination ofthe need for lifestyle and medical inter-vention for CVD risks in persons withSCI, while incorporating the most widelyrespected and utilized assessment guide-lines (the National Cholesterol EducationProject's Clinical Guidelines, 2002). Theresearch findings will help medical andtherapeutic professionals to efficientlyallocate their resources, address patient-specific risks known to contribute to CVDrisk, and allow the course of CVD to besystematically tracked with passage oftime after SCI, should someone needfuture intervention. So far findings indi-cate that nearly three-quarters (70%) ofotherwise healthy adults with spinalinjuries below level T5 had cholesterol lev-els requiring substantial lifestyle changesor medical intervention.

Healthy People 2010 (HP2010) is anational health promotion and disease pre-vention initiative developed by the U.S.Department of Health and Human Services.

HP2010 outlines health objectives and goalsto be achieved by the year 2010. These objec-tives are designed to identify significant, pre-ventable health threats in an effort to increaseAmericans’ quality and years of life. HP2010lists "Disability and Secondary Conditions"as a main area of focus, to eliminate dispari-ties between people with and without disabil-ities. The major goals and objectives aregeared towards health promotion and reduc-ing chronic disease associated with diet andweight, in addition to improving health, fit-ness, and quality of life through daily physi-cal activity.

To address these physical activity goals,another research project of the RRTC is todevelop exercise-based programs that allowpeople with SCI to be more physically active,and determine if participation in an exerciseprogram can reduce selected secondary con-ditions. Although people with disabilitiestend to be less physically active than peoplewithout, the benefits of exercise for thosewith SCI mirror positive multi-system healthbenefits for those without paralysis. Personswith SCI should avail themselves of habitualexercise practices as much as their disabilityallows, to help reduce secondary conditionsand increase quality and years of life.

For more information on the RRTC onSCI: Promoting Health & PreventingComplications through Exercise, visit ourwebsite at www.sci-health.org.

Mel Neri is the Project Coordinator forthe RRTC on Spinal Cord Injury at theNational Rehabilitation Hospital inWashington, D.C.

Preventing Secondary ConditionsAssociated with SCIResearch to Extend Long-Term Health

By Marcie Roth,Executive Director, NSCIA

A year ago, on his birthday, I wrote of Dr.Martin Luther King Jr., a guiding lightfor many — and a figure of great inspi-

ration for me — in the struggle for civilrights and inclusion. Today, I again think ofDr. King, who built bridges between peopleof different races, ages, and classes, so thatour world would someday be inclusive ofeveryone.

Bridge build-ing is vital toNSCIA. LastMay, during SCISummit 2005,we strengthenedour commit-ment to buildingbridges betweeneveryone whoattended — ourfederal partners,people with SCI

and their families, advocates, serviceproviders, researchers, and the media.

Bridge building is critically importantin SCI research. While many are eager formore scientific study to be conducted onrepair of the cord and restoration of walk-ing, there are differing agendas to be foundamongst researchers.

Some people feel that all research effortsshould be focused on walking, that theirquality of life cannot be restored until theycan walk. That is their definition of a cure.

Walking is good! Of course. We areexcited by any medical advance that bringsthis goal the smallest step towards becom-ing a reality. The Miami Project to CureParalysis is just one place where excitingresearch is taking place towards the regener-ation and restoration of the injured spinalcord. Last June, the New York Timesreported that the Miami Project’s fundrais-ing spokesperson Marc Buoniconti — whosustained a C3/4 spinal cord injury in 1985— walks three times a week with the aid ofa mechanical walker. “These past 20 years,”he told the Times, “have been a medicalrevolution.”

To the general public — and even someexperts — SCI research is all about walk-ing. Say the words “spinal cord injury” and“research” in the same sentence, and manypeople immediately default to this oneword phrase; “RESEARCHTOWARD-SACUREFORSPINALCORDINJURY”.

But SCI research isn’t, and shouldn’t,be only about walking. Some in the SCIcommunity have a broader perspective onwhat SCI research could focus on. Forthem, research should be geared towardmaximizing quality of life, enabling themto live as healthily and productively aspossible. With their SCI, until or if thereis a cure. They want research that maxi-mizes their self-determination and partici-pation in their communities.

Take bladder and bowel control; not avery sexy topic. Yet for some, this issue isthe line in the sand between being able tostay in their own home or being forced tolive in a nursing home. For them, restora-tion of bowel and bladder control is a muchhigher priority than walking.

Others want research to enhance fami-ly life for people with SCI. They wouldlike to see more scientific studies on fertil-ity, to help more people with SCI havechildren (an area where considerableprogress has already been achieved in help-

ing paralyzed men produce viable semen).They’d like to see research on the ability ofwomen with SCI to have a positive experi-ence nursing their babies.

A friend of mine developed a pressuresore because his insurance company deniedhis request for a replacement seat cushion.The lack of a proper cushion caused hisskin to break down. He ended up in thehospital — on his stomach for about a year.He had to have major surgery to repair hispressure sore. Further research is needed onthe prevention and treatment of pressuresores, and the wisdom of funders paying inadvance for the seating technologies alreadyavailable to people with SCI that wouldprevent this kind of huge financial waste.

Seventy percent of people with SCI areunemployed ten years post injury. Researchneeds to be conducted on obtaining andmaintaining employment for people withSCI and other disabilities.

Then there is the issue of pain, alreadyunmanageable for some with varyingdegrees of sensation. If there is a cure —presumably including full restoration ofsensation — would there be amplified painfor some people? Would the cure be worththis pain? Research into restoration of sen-sation must rely on continuing research onpain management.

Practical questions deserve equal priori-ty to walking in SCI research. We believethat there is room for a broad researchagenda that incorporates a wide array ofpriorities.

We at NSCIA strive to be good stew-ards of everyone’s agendas. Research willnot be a force for change in the lives of peo-ple with SCI if there is in-fighting overagendas. We must build bridges.

At SCI 2005, we began creatingbridges. This coming October at SCI 2006,we will keep our eyes on the prize: self-determination and choices for all peoplewith SCI.


Building Bridgesfrom the executive director

PartnersWe gratefully acknowledge

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who help make this publication possible.

MEMBER VALUE PARTNERSBank of America

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Visit www.spinalcord.org for details

By Judi Zazula

It began as an unremarkable day in1996, but on the drive home, CraigCook was involved in a horrible traffic

accident. He had broken his neck and wasparalyzed from the shoulders down. Hisparalysis cost him independence, changedhis professional identity, and his sense ofwho he was. Craig needed to rely on oth-ers, and yet he also needed his privacy andindependence.

Craig’s life was changed once again —for the better — when Minnie, his HelpingHands monkey, entered his life. Craigdescribes Minnie as his partner, his friend,and his little girl. “She has given so muchback to me — little things that mean somuch. If my phone drops out of my lap,Minnie can fetch the phone and repositionit. My phone is my lifeline. She helps me getsomething to eat or drink, to turn on andoperate my computer, and even to scratch anannoying itch that I used to try to think away

before Minnie was here to help.”Her talented little hands effortlessly

handle the objects and activities thatCraig’s hands cannot manage. But Minnienot only helps Craig to be more independ-ent, she also comforts him and has easedthe loneliness that he was feeling.

Helping Hands: Monkey Helpers forthe Disabled, Inc. has been trainingCapuchin monkeys like Minnie as helpersand companions for people with spinalcord injuries and other mobility impair-ments since 1979. Since then, more than105 placements have been made.

Capuchins have a lifespan of thirty toforty years, so many partnerships have lastedfor more than twenty years. They are tropicalmonkeys found from Nicaragua to Paraguay,named for their cap of crown hair, whichresembles the cowl of Capuchin monks, abranch of the Franciscan order.

Young monkeys are raised by volunteerfoster families for about five years, wherethey learn what any young child learnsbefore they are old enough to go to school.Foster monkeys start each day with a bath,they wear diapers until they’re pottytrained, and they live their lives as part of ahuman family. When they are ready fortraining, they return to Helping Hands inBoston, Massachusetts.

At the Monkey College, they are indi-

vidually trained overthe next two years inclassrooms speciallydesigned for monkeys.The trainer uses amouth or hand operat-ed laser pointerattached to the wheel-chair to tell the mon-key which object tomanipulate. Withpraise and small treats,monkeys learn to helpwith activities such asrepositioning a handor a foot after a musclespasm, repositioningmouth controls, andactivating CD andDVD equipment. Before graduation, eachmonkey is matched to a person who is ide-ally suited to that monkey’s abilities, limita-tions, and personality.

Ideal monkey helper recipients are notonly looking for greater independence, theyare also excited about sharing their lives witha monkey for many years to come.Applicants should have stable and reliableattendant care, and they should have achance to plan for returning to school orwork, before applying for a monkey helper.

People interested in receiving a monkey

helper begin the application process bywriting a letter describing their disability,any change in ability over the last ten years,attendant support, pet history, and anyimpairment in their ability to make gooddecisions. Additional application informa-tion and Frequently Asked Questions canbe found on Helping Hands’ web site atwww.monkeyhelpers.org.

People are selected to receive a monkeybased on who is an ideal match for a monkeycurrently in training. Some appropriate

Glad to Monkey AroundCapuchins of Service

to People with SCI



Cure or Quality of LifeMuch in Common

By Harley Thomas,President, NSCIA

In November, 1982 following my accidentresulting in T5 paraplegia, I asked mydoctor if there was a chance I would walk

again. His response was immediate andwithout any hesitation, "If I were a betting

man, the answerwould be no!"

Twenty-threeyears later thosewith a recently-acquired traumaticspinal cord injuryare starting to heardifferent answersthat offer hope. The

question is not "will there be a cure?," rather"when will there be a cure?"

The National Spinal Cord InjuryAssociation believes everyone with SCIdeserves the best quality of life (QOL) possi-ble by way of advancing rehabilitation thera-pies, affordable housing, assistive technolo-gies, accessible transportation, and jobs.Does this mean that NSCIA is not interestedin a cure? Does this mean NSCIA believesmore money should be spent on QOL andless on research for a cure?

The answer is a resounding "no!"Medical research toward finding a cure forSCI and advances which improve QOL gohand in hand. That is our association posi-tion, and it is my personal belief.

Over the past ten years there has been asignificant increase in the numbers ofresearchers working on many different poten-tial paths toward a cure for SCI. This researchhas led to many new therapies and drugs thathave been used in early intervention followingtraumatic SCI, significantly increasing QOL.

When Christopher Reeve was injured in1995, almost all traumatically acquired SCIresulted in a diagnosis of "complete injury."There were relatively few "incomplete" diag-noses — the term used to describe damage tothe spinal cord that is not absolute. Ten yearslater the statistics show a very different pic-ture. Around 31% of individuals with quad-riplegia and 23% with paraplegia are beingdiagnosed as "incomplete." The dramaticchange in the statistics relate primarily to theintroduction of new therapies that have beendeveloped as a result of SCI cure research,such as the now-standard administration ofanti-inflammatory drugs immediately fol-lowing traumatic injury.

One of the most respected and leadingSCI researchers in the world, Dr. Wise Youngfrom the W.M. Keck Center for CollaborativeNeuroscience, Rutgers University, when askedif there will be a cure for SCI, answered "If acure means eradication of spinal cord injury, Ithink that it is unlikely in my lifetime." Dr.Young went on to say, "If a cure means com-plete restoration of all function to "normal" orpre-injury levels for all people with spinal cordinjury, I think that this is also unlikely becausewe probably will not have therapies that cancompletely reverse aging. On the other hand,"

Dr. Young continued, "I believe that there willbe effective therapies which restore function topeople with spinal cord injury, includingtouch and pain sensations, bladder and bowelfunction, erection and ejaculation, and motorcontrol including long-distance walking."

I have no formal medical background, butDr. Young's observations strikes me as realistic.Having been paraplegic for the past 23 years,I believe it unlikely that I will live to see some-one like myself return to pre-injury levels.

The concept of cure can hold differentmeanings for different individuals. To a per-son with quadriplegia who has little or no useof their hands, a therapy that restores the abil-ity to hold a pen or button a shirt would sure-ly be considered curative. Indeed it wouldrepresent a significant improvement in QOL.This and many other "cures" are not dreamsfor the future; they are happening now.

I have had discussions with numerousresearchers, and they tell me that the singlemost important step to achieving a cureand maximizing QOL is the performanceof clinical trials. On December 17th 2005,leading SCI research scientists from aroundthe world came together in Hong Kong topresent their latest works and progress, for-mulated a plan to foster clinical trials. Itwould be wonderful for SCI clinical trialsto take place here in the U.S., but due torestrictive government regulations regard-ing many forms of SCI cure research, allsigns are pointing to other countries such asChina, Japan, Korea, and others.

Wherever the science originates,wherever the trials take place, those of uswith SCI can look forward to the bene-fits, as breakthroughs in research movetowards cure later as they enhance ourquality of life now.

from the president Look for

six times a year in 2006!

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If you are not already amember, join NSCIA today –

it’s free!Visit www.spinalcord.org


By Ron Cohen, MD

It has been 20 years since scientists havedemonstrated that damaged nerves in thespinal cord are capable of repair. That

discovery opened the floodgates tounprecedented progress in SCI research.Some of the key advances since the mile-stone 1986 study include:

• The discovery of powerful inhibitoryfactors in the central nervous systemthat stop spontaneous regenerationafter injury

• The role of demyelination in contribut-ing to the degree of impairment thataccompanies SCI

There have also been substantialchanges in the way the SCI communityitself views progress on this front.“Walking” is no longer the only endpointthat matters. People like Christopher Reevehave shown very powerfully that smalladvances in function — such as improve-

ments in bowel and bladder control, orreducing painful muscle spasticity — createmeaningful improvements in health andquality of life.

And yet, today there are only a handfulof products in human clinical trials forspinal cord injury, and just a few moreexpected to begin in 2006. Why aren’tthere more? Every few months the mediareports some exciting new development inearly stage R&D in SCI. Why aren’t moretreatments moving into the clinic?

Drug development is a function of timeand money. While the media tends to focuson advances coming out of university labo-ratories, the truth is that academia does notbring drugs to the consumer.Pharmaceutical and biotechnology compa-nies do that. However, the federal govern-ment — and to a lesser degree, privatefoundations — have the ability to fosterthis process in the form of a very powerfultool: research grants.

“Translational research” refers to themovement of science from the laboratoryto therapies in the clinic. Today, the major-ity of research that gets funded continues tobe very early stage, basic science. TheNational Institutes of Health (NIH)recently has begun to implement transla-tional research grants to support later stagescience that can be brought to clinical tri-als. Some private foundations are begin-ning to consider this approach, as well.

Yet, overwhelmingly, reviewers of bothgovernment and private grant applications

are academic scientists who may tend tofavor the basic science approach that theyare familiar — and most comfortable —with. Review panels, also known as “studysections,” should consider the addition ofreviewers who have real-world experiencein bringing therapies through clinical andcommercial development.

You might ask why a for-profit drugdevelopment company should expect toreceive any government funding at all.

Innovations in medicine today, espe-cially for conditions that affect relativelysmall groups of people like those with SCI,are often generated in small biotech com-panies. Early stage funding is a constantchallenge for these companies because ofthe huge costs involved in developing evenone new drug successfully. The TuftsUniversity Center for the Study of DrugDevelopment has estimated that it takesover ten years and $800 million to bringjust a single drug from the laboratory intothe pharmacy. These small companies oftenhave important technologies at preclinicalstages of development, but without outsidesupport they cannot afford to fully fundthese early stage programs.

Translational grants can be key to mov-ing these technologies into clinical stages,after which non-government funding maybe available to take them the rest of the wayto approval and commercialization.

Some federal grant programs have beentailored specifically to support translationalresearch at small companies. These includethe SBIR/STTR (Small Business

Innovation Research/Small BusinessTechnology Transfer) and ATP (AdvancedTechnology Program) grants. These grantshave been essential to the survival andprogress of numerous new technologiesinto the clinic. However, these programsare under attack. Changes at the SmallBusiness Administration may exclude themajority of privately-held small biotechcompanies from receiving SBIR or STTRgrants. The ATP program has beenattacked repeatedly by certain members ofCongress and its funding threatened.

If the federal government would focusmore grant dollars to advance therapiesinto human clinical trials, there will be a

Clinical Trials for SCIWhat’s the Holdup?

f rom the edge

By Len Zandrow,NSCIA General Counsel

A s of December, 2005, the NationalInstitutes of Health (NIH) web site list-ed 44 ongoing studies involving research

subjects with spinal cord injuries. The choiceof whether toparticipate in ane x p e r i m e n t a lresearch studycan be one of themost importantlife decisions aperson makes.Here are somekey points tokeep in mind ifyou’re consider-

ing participation in a trial.There should be an established protocol

or plan which specifies the length of thestudy, what types of persons may partici-pate, and the schedule of tests, treatments,and procedures.

Eligibility criteria for SCI researchstudies may include factors like age, gender,extent and duration of injury, previoustreatment history, and presence or historyof other medical conditions. Because manymajor studies are funded, at least in part, bygovernment grants, guidelines typicallyspecify that sponsors may not discriminateagainst candidates on the basis of improp-er, non-medical criteria.

Expected benefits need to be weighedagainst potential risks. Assuming that theresearch study is well designed and imple-mented, participants might obtain the ben-efit of access to promising new therapiesbefore they are generally available to thepublic. They may receive expert medicalcare at leading facilities not otherwise cov-ered by their medical insurance.Participation offers the research subject theprospect of improved health and quality oflife. It can also appeal to a patient’s altruis-tic desire to help others by contributing tothe general state of medical knowledge.

Of course, research studies can alsoinvolve substantial risks. There may bepainful, serious, or even life-threateningside affects to medical experiments.Adverse side affects may be both immediateand long-term and may not be fully knownat the time of participation. Participationmay also be burdensome, possibly involv-ing a substantial amount of time and effortfor treatments and follow-up visits.

Of course, there is also no guarantee ofsuccess. Experimental treatments may notbenefit the patient at all, especially in a“blind” pharmaceutical study in whichsome participants do not receive the actualmedication, but rather a “placebo.”

Most research studies are sponsored by

medical institutions, foundations, thepharmaceutical industry, or Federal agen-cies such as the NIH, and are governed bycomprehensive ethical and legal standards.For example, every clinical trial must beapproved and monitored by anInstitutional Review Board (IRB) com-posed of independent physicians, educa-tors, and community advocates. The IRBmust initially approve the study’s protocoland periodically review its findings toensure that the researchers are following theestablished guidelines and procedures.

Research candidates must understandtheir legal rights and obtain informed con-sent before participating in any clinicaltrial. The research candidate should meetwith a member of the clinical team, prefer-ably a physician, and be advised in a rea-sonable manner of all significant medicalinformation that the physician possesses —or reasonably should possess — that ismaterial to an intelligent decision whetherto participate in the study. It might be help-ful for a family member or friend to partic-ipate in this meeting for support and possi-ble follow-up questions. Suggested lines ofinquiry include:

• Purpose and duration of the study• Eligibility criteria• Details regarding the medical

procedures involved• Likely benefits and risks, and possible

impacts on daily living• Physician who is primarily responsible• Location where treatments will

be performed• Prior results of comparable studies• Person or entity paying for

the treatments

• Whether the participant must bear anyout-of-pocket expenses

• How participant can monitor his or herpersonal progress

• Any requirements for follow-up care• Whether participant will receive a copy

of ultimate results

The study’s clinical team will be com-posed of doctors, nurses, social workers,and other professionals. They should checkthe health of the participant at the begin-ning of the trial, provide directions for par-ticipating in the study, monitor the partici-pant throughout the trial, and perform fol-low-up tests. To protect confidentiality, hisor her name should remain secret and notbe disclosed in any published reports.

During the study, participants shouldcontinue to consult with their primary carephysicians, as necessary, to ensure that theirother medications or treatments do not con-flict with the research protocol. Even aftermaking a commitment to participate, theyare free to change their minds. Informedconsent should not be viewed as a bindingcontract; one can leave an experimental trialat any time. When withdrawing from thestudy, however, the participant shouldinform the research team and offer his or herreasons for leaving the study.

Participating in a research study canoffer profound benefits to an individualwith SCI, and to the disability communityat large. When carefully conceived and per-formed, research studies provide one of thefastest and safest ways to test new theoriesfor improving quality of life with SCI, yetone must seriously consider these key legalissues to consider before taking part in anyresearch study or clinical trial.

Deciding to Joina Clinical TrialYour Rights and Priorities

l ega l

Ron Cohen



Lobbying for SCIPolitical Advocacy inMassachusetts

By David Estrada,Greater Boston NSCIA

A s I look up the word "political" in mydictionary, it tells me, "of, concernedwith, or engaged in government." For

the word "advocate" I find, "one who pleadsanother's cause" or "in support of some-thing."

Most of us with SCI become politicaladvocates immediately following injury. Wefile for SSI or SSD, or we appeal our insur-ance company's denial of benefits. This is ourintroduction to political self-advocacy 101.It's not easy to do — but it's easy to avoid.It's especially easy to feel helpless when facingdown the "bureaucratic machine."

This is how I felt eight years ago, when

I received a call from theGreater Boston Chapter ofthe National Spinal CordInjury Association asking me,"Can you join us at the StateHouse to push for funding ofthe Home ModificationBill?" I had often driven bythe massive, imposing struc-ture of the State House inBoston, sitting atop BeaconHill, its giant, gold domebeaming with the sunlight.

The Home ModificationBill would enable personswith disabilities to take outlow interest loans to maketheir houses accessible. There were rumorsthat certain politicians wanted to cut thebill out of the budget. I told the caller,"Sure, I'll meet you there."

At first, I was intimidated by the sizeof the hallways and ceilings in the StateHouse. At the meeting site, there wereapproximately fifteen people — half ofthem wheelchair users. I gravitated to afamiliar face, who handed me a "cheatsheet" on what to say to my legislator. Acouple of hours and many stops at legisla-tors' offices later, my first journey as a"lobbyist" ("one who tries to get legislatorsto support certain measures") was accom-

plished. A week later I learned that theHome Modification Bill would be fullyfunded.

"Wow," I thought, "that was pretty easy."The Greater Boston Chapter of NSCIA

follows and supports measures in theMassachusetts State Legislature which pos-itively affect people with SCI. For example,a Spinal Cord Injury Trust fund was recent-ly established. Any time someone's driver'slicense is revoked, a $50 surcharge must bepaid to reinstate it. Half of that money goesdirectly towards spinal cord research.

A Massachusetts doctor whose sonbecame paraplegic in an auto accident had

come to a chapter event, and contacted usabout having met his State Representativeat a holiday party. After telling theRepresentative about his son, he had wonan ally in the State House. The two met todiscuss drafting legislation for a SCI TrustFund, initially a duplicate of the BrainInjury Trust Fund, which tacks $50 ontoevery speeding ticket, all of which goes intobrain injury research. Our bill was metwith resistance by the Brain InjuryAssociation; they assumed the SCI TrustFund would take money away from theirfund. We were able to resolve the conflictby designing an alternate method of fund-ing for the SCI bill.

We collaborated on this effort with twoother non-profits, Massachusetts WalksAgain and The Travis Roy Foundation, allof us giving testimony and lobbying indi-vidual legislators.

Our chapter’s Advocacy Committee ismade up of four individuals who meetand discuss the current issues, and man-age the process of deciding priorities forhow to focus our resources and energies.Our current interests are in Medicaidfunding, home modification loans, andaccess to personal assistance. We are alsoconsidering lobbying for transitionalfacilities in response to shortened acute

chapter report

By Miriam Wilkens, IPC Mediaand Communication Director

Have you witnessed the intense thrill ofa sit-skier traversing a winding slalomcourse? Ever seen a blind athlete race

down an Alpine slope at over 60 miles perhour? Can you imagine AustralianParalympic downhill skierMichael Milton, with asingle above-the-kneeamputation, reachingover 130 mph?

From March10–19, 2006 you canwitness such remark-able athletic feats andaction at the 2006P a r a l y m p i cWinter Gamesin Torino, Italy.Athletes withdisabilities will be performing atworld-class levels in events includingAlpine Skiing, Ice Sledge Hockey, NordicSkiing (Biathlon and Cross-Country), andWheelchair Curling. The largest delegationat the Torino 2006 Winter Paralympics willbe from the U.S., with approximately 59athletes participating in all four sports.

The Paralympics will take place twelvedays following the able-bodied games.They take place at the same location and

facilities, as a matter of contract betweenthe International Olympic and ParalympicCommittees (IOC and IPC) who signed anagreement to that effect following theSydney 2000 Paralympics. The athletes willlive in two Paralympic Villages, speciallybuilt and made accessible for the Olympicand Paralympic Winter Games.

The Athletes Villages were built withaccess in mind from the start, as were anynewly built, permanent structures.Temporary adjustments will be made beforethe Olympic Winter Games or during thetransition period between the Olympic andParalympic Winter Games as necessary. InTorino’s competition venues, most of theadjustments will be made in the transition

period betweenthe Games.

The IPC isthe internation-al governing

body of sports forathletes with a dis-ability, supervising

and coordinatingthe organiza-

tion of the

P a r a l y m p i cSummer and WinterGames, as well as the worldand regional championships

for the thirteen IPC sports. TheIPC also develops sporting opportunitiesaround the world for athletes of all levels,from grassroots to the elite level.

The Opening Ceremony will be heldin the former Stadio Comunale, now therenovated Olympic Stadium, in Torino.Ice Sledge Hockey will also take place inTorino, in Torino Esposizioni.Wheelchair Curling will be hosted 27

miles from Torino in Pinerolo. The snowevents will be raced in the mountains;Nordic Skiing 55 miles west in Pragelato,and Alpine Skiing another nine milesfurther along the same highway toSestriere-Borgata.

At the Salt Lake 2002 WinterParalympics, Germany brought home themost gold medals with 17, followed bythe U.S. and Norway. However, the U.S.won the most total medals: 10 gold, 22silver, and 11 bronze. This year’s WinterParalympics will see more countries andathletes participating than ever before. InSalt Lake, 416 athletes from 36 countriescompeted compared to the approximately540 athletes from 40 countries expectedin Torino.

Of the potential athletes that could beselected to represent the U.S. team forAlpine Skiing, 21 compete in sitting sportclasses. For Nordic Skiing there can be fivepossible athletes, another five forWheelchair Curling, and fifteen for IceSledge Hockey. On January 24 (just afterSCILife went to press) the final athleteswere selected to fill the 59 athlete qualifica-tion slots allocated to the U.S. team. Formore information regarding U.S. athletesvisit www.usparalympics.org

On everyone’s mind inthe Paralympic community:will the U.S. Ice SledgeHockey team retain its

championship after theirthrilling underdog victory four

years ago in Salt Lake City?The following disability groups will

be represented at the Torino 2006Winter Paralympics: amputee, cerebralpalsy, spinal injury, visually impaired,and “les autres,” which encompasses dis-abilities that don’t fit the other cate-gories. Almost all U.S. athletes will be“sitting” athletes, competing in a wheel-chair (Wheelchair Curling), on Ice

Hockey sledges, Cross Country sledges,or Alpine Skiing mono-skis.

Wheelchair Curling, a game of greatskill and strategy, will be offered for thefirst time at the Torino Games. The firstWorld Cup in Curling for wheelchairplayers was held in January, 2000 inCrans-Montana, Switzerland. The sport isopen to individuals who are non-ambula-tory or can only walk short distances,including athletes with significantimpairments in lower leg/gait functionwho usually require a wheelchair for dailymobility. Each team must be comprisedof male and female players.

Tickets for all Paralympic events,except the Opening and ClosingCeremony and the Ice Sledge HockeyFinal, cost US$14.50. The ticket pricesfor the Opening and Closing Ceremonyrange between $36 and $100, andbetween $17 and $36 for the Ice SledgeHockey Final. Tickets can still be pur-chased at www.cosport.com/para-lympics.asp.

At the IPC Governing Board Meetingin Torino, Italy, in April 2005, it wasagreed that due to the fact that a mutually-agreed eligibility and verification system forathletes with an intellectual disability wasnot in place, the inclusion of such eventson the Torino 2006 Paralympic WinterGames Programme was not possible.

Paralympians To Excel in Italy

sports



The Massachusetts State House.


ing for. Dr. Giambrone says he wouldn’t rec-ommend Dr. Kao’s procedure because he’sgetting too old to be performing this type ofprocedure and the results just are not there.

Leo, 29 years after his C4-5 spinalcord injury, journeyed to China for Dr.Huang's surgery in search of enhancedarm function. The surgery takes fourhours, with a recovery period lasting aweek or more. While Leo was in China,two younger people had achieved armfunction, though he was unclear about thepre-treatment details of their injuries.

Leo lives in South Dakota where heserved as city councilman and mayor of hislocality. Being older weighed heavily in hisdecision-making process; he didn't want towait another five to ten years for the prom-ised "cure." About one year after the sur-gery he noticed a strange sensation while hewas outside on his deck — a slight breezewas blowing the hairs on his arm and themessage was able to reach him for the firsttime. Although only a small gain, it wasenough to give Leo hope that the stem cellsmay give him greater return in the future.

People with SCI and their loved ones arelooking beyond American borders in searchof cure. Although this quest is nothing new,stem cell research and other new proceduresbeing explored — and offered — over the

last few years around the world has intensi-fied interest in international therapies.

What’s happening out there? Are peo-ple throwing caution to the wind, saying,“Change me back to the way I wasbefore!”? Says Sam Maddox, of theChristopher and Dana Reeve ParalysisResource Center and the original editor ofNew Mobility magazine, “People have losttheir patience. They hear about somethingthat sounds promising and they suspendtheir judgment, take a leap of faith, anddon’t think it through. It’s understandablethat people are legitimately frustrated, butthey are risking their health.”

Dr. Incencia Carrano, a PhysicalMedicine and Rehabilitation doctor withHelen Hayes Hospital in New York, saidshe had a patient who went to China andcame back worse off and with less func-tion then he had originally. James (not hisreal name) had researched Dr. Huang’sprocedure, talked to other patients, wasreassured by comments he found on theInternet and by conversations with Dr.Huang. Now he is weaker in his tricepsand wrists than before the surgery. "It wasan extremely frustrating experience," hesays. Especially for someone who wasstudying to be a chiropractor before hisC7 injury. James has kept in touch withfive others who underwent the procedure— none have had any return of function.

One also risks being disqualified fromparticipation in future clinical trials.Researchers would have a difficult time dis-

tinguishing the new results from the effectsof a previous treatment.

So, how do you determine real prom-ise from quackery? Eminent SCIresearcher Dr. Wise Young created theCareCure website (www.carecure.org) toaddress this question, an excellent sourceof information about cutting edge proce-dures and personal stories of people'sexperiences with some of these therapies.It’s a valuable starting point before book-ing travel for an offshore therapy.

Dr. Young is involved with a one-yearclinical trial in China to determine ifembryonic stem cells are able to bridgespinal cord damage and achieve functionalconnectivity. He has found that some ofChina’s surgical techniques are superior tomethods used in the U.S. because they havehad a greater opportunity to practice theircraft with less restrictions. SCI injuries inChina have been on the increase, with anincidence five times greater than in the U.S.

Jan-Eric Ahlfors, CEO of TotalReCord, Inc. which is in clinical trials witha drug for neuronal tissue regeneration,says that even an effective procedure thatworks often demands as much as eighthours a day of physical therapy for over ayear to see results. And then there is no wayto know whether the result is from theintensive PT or the procedure itself.

Ahlfors, who has visited and workedon projects in Russia, says, “During theCold War years, Russian researchers pur-sued a biological treatment model versus

the pharmaceutical approach to treatmentemphasized in the West. They have moreexperience and historical data on stemcell trials.” Their standards for trials arealso very robust and cautious, leading tomore reliable results though over a muchslower process of development.

With increased cooperation, sharingof information, and funding, greaterstrides may yet be made in the global fieldof SCI research. Current activity hasalready encouraged pharmaceutical com-panies and investors to take a fresh look atfunding SCI research. In the past, thepotential profits were too low to justifyinvestment, but with a new perspective onthe amount of money that could be savedby the reduction of chronic SCI, and theapparent willingness of insurance compa-nies to pay thousands of dollars for treat-ments in order to reduce their liability —this model is becoming more feasible.

The ability to move basic science intomeaningful clinical trials will producesome of the results we are all hoping for,such as, “what’s working, where, how andwhy?” No therapy can be confidently rec-ommended until there is responsible data,generated in a disciplined scientific man-ner, to give potential recipients the confi-dence in recovery and safety that must bethe standard — wherever the treatment isto be found. Thus the advice of SamMaddox: “It’s your choice, but make surethe treatment is based on real science.Think it through.”

Continued from page 1

Going Offshore...

South Korean Stem CellResearcher Discredited

Professor Hwang Woo-Suk hadbecome a national hero to a countrywith a historic inferiority complex.

After having been dominated by theJapanese, caught in a battle betweenChina and the United States on their soil,ultimately divided into two, the SouthKoreans took great pride in the belief thatone of their own had made pioneeringstrides in international stem cell research.Professor Hwang presented his team’sresearch in the journal Science, withclaims that he had produced humanembryonic stem cells with a radically effi-cient approach that did not involve fertil-ization, working only with the egg andnucleus. His group also announced thatthey had cloned the first dog, earningthem accolades from around the worldand great prestige in their home country.

A panel from Seoul National Universityreceived claims by former colleagues that"key findings in their paper were false" anddetermined that “the data in 2005 wasintentionally fabricated, not an accidentalerror.” Accusations also included that theresearch involved eggs from female staffmembers on the team, a serious breach ofscientific ethical protocol.

Hwang has now withdrawn the resultswhich claimed his group had produced

eleven stem cell lines, having fostered hopethat the technology was fast developing tothe point where it would someday offertherapies for an array of human conditions,including spinal cord injury. In his publicstatement he suggested that someone hadintentionally altered the evidence, holdingto the position that his work had madevalid strides.

Yet the scientific community fears thatstem cell research as a whole has been setback as a result of the Korean scandal.Likewise for investors in the work; shares ofAdvanced Cell Technology Inc., one of thefew publicly held U.S. companies that areresearching embryonic stem cells fell 16%on the news.

Adapted Bicycles Stolen

The Bay Area Outreach Program(BORP), which runs a variety of recre-ational programs in the San Francisco

Bay Area kept a livery of 35 adaptive cyclesin a storage shed in Berkeley. As the 2005holiday season ramped up, thieves tookthem all away, along with every helmet,tool, and tube stored alongside. The loss isvalued at up to $80,000. Among them arehandcycles, adapted tricycles, and tandembikes which can accommodate blind riders.

23 of the bikes had been donated bythe Athletes Helping Athletes Foundationsponsored by Clif Bar and Road RunnerSports. The BORP program served hun-dreds of children with disabilities — aswell as adult handcyclists — unable toafford the expensive bikes on their own.

Said BORP in their December 12 pressrelease, “Thieves essentially wiped out aprogram that has made a profound differ-ence in the lives of hundreds of disabledkids in the greater Bay Area.”

In response, donations have beenpouring in, including $25,000 fromPacific Gas & Electric, $10,000 fromWells Fargo Bank, and $5,000 from fig-ure skater Kirsti Yamaguchi’s charitablefoundation. Donations can be madethrough www.borp.org or by calling510.849.4663.

BORP and the Berkeley police haveasked people to keep their eyes open atflea markets and on Craigslist and otheronline auction sites. BORP will reim-burse anyone who purchases one of thebikes and returns it to them.

Disability CommunityConcerned about NewJustice Alito

The record of Supreme Court nomineeSamuel A. Alito Jr. — confirmed tothe court on January 31 by a Senate

vote of 58–42 — reveals positions thatgive leaders in the disability communitycause for concern, as he replaces JusticeSandra Day O’Connor on the U.S.Supreme Court.

Judge Alito, 56, has sat on the U.S.Court of Appeals for the Third Circuit since

1990, nominated by George H.W. Bush. Heis considered a strong conservative, and aforce that will shift the balance of theSupreme Court to the right as he replacesO’Connor, a “swing voter” who judged eachcase on its merits without applying a consis-tent conservative or liberal philosophy.

A primary concern is that Alitobelieves in a restricted power for Congressin the passage of civil rights laws, includ-ing the Americans with Disabilities Act.The ADA has already been weakened bythe Court, which has limited who mayfall under the definition of having a dis-ability. According to ADA Watch, “Hisrulings demonstrate cramped views ofCongress's powers that would put criticaldisability rights laws at risk.”

He is also expected to wield a heavyhand with regard to Medicaid enforce-ment, requiring accessibility in federally-funded housing, and rights under theFamily Medical Leave Act.

Yet Andy Imparato of the AmericanAssociation of People with Disabilitieswrote that, “If one looks more broadly atJudge Alito's 15-year history on thebench, there are certainly a number ofrulings interpreting disability rights lawsthat are well-reasoned and reflect a goodunderstanding of the nature of disabilitydiscrimination,” noting that Alito’s recordhas been “mixed,” particularly where hissupport of state’s rights over disabilityrights is concerned.

Judge Alito’s confirmation is seen asfulfilling one of President George W.Bush’s goals of moving the court in amore conservative direction. The closevote in the Senate affirms for some theclosely divided and contentious nature ofthe current political climate.

news briefs


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THE NSCIA RESOURCE CENTERTHE NSCIA RESOURCE CENTER

We can help you with:Seeking local resources

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Non-NSCIA sources of support

Locating rehabilitation facilities

Funding information and insurance guidelines

Relevant web sites

Fami l i e s w i t h new i n j u r i e s a re g i ven t op p r i o r i t yFami l i e s w i t h new i n j u r i e s a re g i ven t op p r i o r i t y ..

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callahan

By Christine N. Sang, MD, MPHand Kate R. Jenkins

Pain following spinal cord injury, infec-tion, or inflammation is a commonproblem with major implications for a

person's quality of life. This pain can occurat a level that interferes with the ability toparticipate in everyday activities. Each per-son's pain varies in intensity, frequency,and duration of episodes. At best it isannoying. At worst, it is nearly unbearable.

There are two broad categories that dis-tinguish pain mechanisms: "mechanical"pain and "neuropathic" pain.

Mechanical pain is brought on by over-use and resulting damage to normal tissuessuch as bones, joints, and muscles. It oftenbecomes worse with movement, and easeswith rest. This pain usually responds wellto existing pain treatments, such as nar-cotics and NSAIDs ("non-steroidal anti-inflammatory drugs," i.e. ibuprofen), andwill often go away when the body heals orwhen the source of the strain is removed.

Neuropathic pain is caused by damageto the spinal cord. With this type of pain,the spinal cord and the brain interpret oth-erwise normal sensations as pain. Peopledescribe neuropathic pain in many ways —burning, electric, tingling, shooting, stab-bing, numbness, aching, throbbing, orsqueezing. It can be very difficult to relieveor cure. Success with currently availablepain treating pharmaceuticals is often com-promised by side effects — like drowsiness,dry mouth, and dizziness. These effects andthe wide variation in individual response totreatments are frustrating for both the con-sumer and physician.

Neuropathic pain at the level of injuryis due to damage to the spinal cord, or tothe nerve roots that exit from the spinalcord. Nerve roots travel from their endingsin the spinal cord to the nerve endings inspecific parts of your body such as yourarms or legs. Doctors may refer to this as"girdle zone pain." This pain is usuallybilateral — experienced on both sides ofthe body — and follows a circumferentialpattern, such as from the stomach aroundto the back. This pain often occurs inresponse to light touch or cold.

Chronic central neuropathic pain(pain that involves the central nervoussystem such as the spinal cord), likechronic pain in general, may begin at thetime of injury or develop gradually overmonths or years post-injury. It can persistfor long periods of time. According tosome reports, as many as 90% of peoplewith SCI have experienced what theywould categorize as chronic pain. This isbecause neuropathic pain often is associ-ated with pain of the muscles and otherstructures ("musculoskeletal pain").

Neuropathic pain following SCI can beintermittent or constant, localized in onespecific region, or throughout the entirebody below the level of injury. This type ofpain often does not respond well to narcotics(e.g. morphine). However, musculoskeletalpain often does respond to narcotics, so it is

common to achieve musculoskeletal painrelief, but only partial pain relief overall.Neuropathic and musculoskeletal pain canoften be difficult to distinguish.

Central neuropathic pain may respondto medications such as anticonvulsants orantidepressants. Some physicians recom-mend injecting local anesthetics next to thenerve roots to numb the painful areas. Thisnumbing effect tends to last only a shorttime (usually a few hours, similar to theblocks used in dental procedures) andreturns immediately to the baseline — orpre-treatment — level of pain. Sometimes,a surgical procedure such as DREZ (dorsalroot entry zone), rhizotomy, or cordotomyis recommended, in which incisions aremade in select nerve locations to interruptthe pain in the nervous system itself.

Some people may find that alternativeor complementary therapies such asacupuncture, biofeedback, hypnosis, relax-ation breathing, or psychological counsel-ing may help their pain. Everyone’s pain isdifferent and there is not a one size fits alltreatment for chronic pain. It is importantthat you work with your doctor to developa treatment plan that is right for you.

If available therapies do not provideadequate pain relief or produce challengingside effects, there is still hope. New drugsto treat central pain are being tested in clin-ical trials. The Translational Pain Researchgroup at the Brigham and Women'sHospital in Boston, MA aims to treat thespecific mechanism believed to cause cen-tral pain, both above and below the levelsof injury. Clinical trials being run by thegroup examine new drugs — as well as newuses of existing drugs — that can hopeful-ly reduce chronic SCI pain with fewer sideeffects than currently available medica-tions. New clinical trials are always beingdeveloped; those interested can sign up toreceive the group’s quarterly newsletter, orget more information by calling617.525.PAIN (617.525.7246), or visitwww.paintrials.org.

Dr. Christine Sang is the Director and KateJenkins is the Program Coordinator of theTranslational Pain Research Program at theBrigham and Women's Hospital and HarvardMedical School. Dr. Sang is a board member ofthe NSCIA, and the organizing chairman of itsMedical and Scientific Advisory Committee.

Pain and SCIThe Challenge of Treatment

However, in consultation with the IPCsports, athletes with an intellectual disabilityshould be able to progressively return to IPCsanctioned competitions as a means of testingthe sport specific components of the eligibili-ty and verification process. The IPC is work-ing to ensure that events for athletes with anintellectual disability in Athletics, Swimmingand Table Tennis will be included on theBeijing 2008 Paralympic Games program.

Although a large interest has beenshown from international media, no broad-caster in the U.S. has secured the rights tocover the Games in Torino. To make surethat households all over the world will beable to receive images from Torino, the IPCis planning to launch a Paralympic sportchannel via webcast. By going to www.par-alympicsport.tv you will be able to watchlive or delayed coverage from all sports.

Paralympians...Continued from page 7

JOIN USFor the Second NSCIA Summit on Spinal Cord Injury

and the SCI Hall of Fame Ceremony

October 15–18, 2006Hyatt Regency, Bethesda, MD

Visit www.spinalcord.org/summit for more details

applicants receive a monkey within a fewmonths; others may wait considerably longer.Some people with more ability may qualify toreceive a monkey with special care needs, suchas diabetes.

During the placement week, a PlacementTrainer accompanies the monkey to theclient’s home, and stays in the area for the nexteight days. During this time, the person andthe monkey are trained together, to ensurethat helping tasks and adaptive equipment areappropriate, that the client becomes an experton the monkey’s care, and that the two havebonded to each other. Regular follow up sup-port continues over the next several months,to ensure a smooth transition for both themonkey and his or her new companion.

Although it costs Helping Hands$30–35,000 to raise, train, and place each

monkey and to provide lifetime support,recipients are not charged for either theirmonkey or support services. Clients arerequired to provide monkeys with the healthydiet recommended by Helping Hands, andan annual veterinary check up, similar to thatof a dog or cat. Helping Hands will continueto follow each monkey’s medical needs andconsult with local veterinarians caring forHelping Hands monkeys.

It’s hard to imagine how a six-poundmonkey can change the focus of a person’s lifeso dramatically. Craig often says that he can-not even imagine life without his little girl. Ashe wakes each morning, he realizes “Now Idon’t concentrate on my life in a wheelchairanymore. I just can’t wait to get up and bewith Minnie! And I know that she can’t waitto be with me, too.”

Judi Zazula is the Executive Director ofBoston’s Helping Hands: Monkey Helpersfor the Disabled, the sole U.S. source forservice monkeys.

Glad to Monkey Around ...Continued from page 4


Alan A. Reich, 75, founder of theNational Organization on Disability(N.O.D.), quadriplegic since a swim-

ming accident in 1962, has passed awayfrom heart failure after a long history ofrespiratory problems.

Academically accomplished, he gradu-ated in Slavic Studies from OxfordUniversity, studied at Dartmouth andMiddlebury Colleges, and earned aMasters in Business Administration fromHarvard University in 1959. He spokefive languages, and served as an infantryofficer in the U.S. Army and as a Russian-language interrogation officer inGermany.

Following his injury, Mr. Reich con-tinued working as an upper manager atthe Polaroid Corporation until recruitedinto the U.S. government as DeputyAssistant Secretary of State forEducational and Cultural Affairs. Heworked in the Department of Health,Education and Welfare and directed theBureau of East-West Trade for theDepartment of Commerce before he wasnamed president of the United StatesCouncil for the International Year of

Disabled Persons in 1978. This positionpresented him the opportunity to be thefirst wheelchair user to address the UnitedNations General Assembly when it

opened the InternationalYear of Disabled Personsin 1981. Reich hadspearheaded the effortto create the program atthe U.N.

Mr. Reich alsohelped build a coalitionof disability groups thatwas instrumental in theplacing of a statue ofPresident Franklin D.Roosevelt in a wheelchairin the F. D. R. Memorialin Washington D.C.

He led N.O.D. for23 years after its found-ing in 1982, the firstdisability organizationconcerned with all dis-abilities and all agegroups. The organiza-tion emphasizes publicawareness of disability,advocating to nationaland international lead-ers. Under his leader-ship, N.O.D. began theseries of surveys con-ducted by the LouisHarris Organization totrack trends in the dis-ability population in allareas ranging from

employment to social activity. This data— which also tracked people with disabil-ities against those without — has beenhighly valuable to advocates.

Mr. Reich was also an advocate forspinal cord injury research. He foundedand chaired the Paralysis Cure ResearchFoundation, was president of theNational Paraplegia Foundation (precur-sor to the National Spinal Cord InjuryAssociation), and founded the NationalTask Force on Disability.

In an interview for Executive Updatemagazine — in which issue he appearedon the cover — Reich said, “I felt that Ihad a responsibility to other people withdisabilities and had always had an interestin international affairs, so I went to theUnited Nations. You must go straight tothe top."

Brewster Thackeray, former vice-presi-dent and director of communications quot-ed in the same article, said, "The entireN.O.D. staff is inspired by Alan's example.He's here every day, arriving early and stay-ing late. Many of us have quit taking sickdays. He inspires us."

Says writer John M. Williams, afteryears of knowing and working withReich, “While he was a man of manyaccomplishments, ‘we,’ ‘you,’ and ‘ourtasks,’ poured out from his lips. The all-important ‘I,’ that most of us crave, didnot exist in him. He was the quintessen-tial modest man.”

At NSCIA we mourn the passage of anesteemed and potent champion of disabili-ty rights. We are honored to be an organi-zation built on his efforts and legacy, andknow that his impact will be felt well intothe future of disability advocacy.

Alan Reich1930–2005

tribute

Happy New Year from Bank of America Accessible Banking Division

Bank of America, a leader in accessible banking and founding company of NSCIA’s Business Advisory Committee, has a wonderful opportunity exclusively for NSCIAmembers – just in time for the New Year! Now through February 28, 2006 NSCIA members can receive up to $75 for opening a new Bank of America account.

Bank of America’s Accessible Banking division is committed to helping all people with disabilities achieve their dreams. That's why they are providing thisexclusive Accessible Banking offer to NSCIA members for our Member Value Partner (MVP) program.

APPLY ONLINE OR IN PERSONTO APPLY, GO TO WWW.SPINALCORD.ORG/BOAOFFER

Then use promotional code NSC to apply online, OR print out the promotion page and bring it to a banking center near you (see the web page for a listing of Bank of America ATMs and Banking Center locations, and Bank of America’s “Account Finder” to find the right account for you).

Offer expires 2/28/2006 and is available through our online application or in any Bank of America banking center**. Offer valid only for new, personal checking and Regular Savings accounts. Offer does not apply to second or multiple checking accounts and/or existing checking customers. All accounts are subject to our normal approval process. This form must be presented at the time the account is opened if account is opened in a banking center. For customers enrolling online, you must use the offer code to be eligible for this offer. If opened in a banking center, the minimum deposit required to open a new,personal checking account and receive the $50 Bank of America Gift Check is $250 and the minimum deposit required to open a new, personal savings account and receive the $25 Bank of America Gift Check is $100. The minimum deposit required to open a new, personal checking or savings account online

varies by account type. If you open both a new, personal checking account and a new personal savings account you will receive a combined Gift check for $75. New personal checking account and new personal saving account must be opened at the same time to receive maximum check amount. You will receiveyour Bank of America Gift Check within 45 business days of account opening. Limit one Gift Check per household. Gift Checks issued by Bank of America N.A. We may report to the IRS the value of any premium. Any applicable taxes are the responsibility of the recipient.

We offer a variety of interest-bearing and non-interest-bearing checking accounts, plus various types of interest-bearing savings accounts. For interest-bearing checking accounts, the Annual Percentage Yield is .10% for any account balance. The Annual Percentage Yield for a Regular Savings account is 0.5% asof 1/10/2006. These rates may change after the accounts are opened. Fees could reduce earnings on the accounts. For savings, transaction limits and excess-transaction fees apply. Please consult a banking center associate, visit bankofamerica.com or see our Personal Schedule of Fees for other checking and

savings account minimum opening deposits, rates and information. Offer may be withdrawn or modified at any time without notice.

** Offer not valid in ID or WA.

Bank of America, N.A. Member FDIC © Bank of America Corporation. All rights reserved.

IITT’’SS SSIIMMPPLLEE• Open both a new Checking & Savings account and you can receive

$75. Or, if you prefer:• Open only a Checking account – receive $50• Open only a Savings account – receive $25

LLIIVVEE WWIITTHH IINNDDEEPPEENNDDEENNCCEEBank of America believes you should be able to bank whenever, wherever andhowever you want. Their Accessible Banking program was designed to offer arange of products and services to accommodate you and your family’s needs:

• Drive-thru Banking• Online Banking with built-in accessibility features• Talking ATMs• Telephone Banking with TTY/TDD service


By Tari Hartman-Squire,BAC Liaison to the NSCIABoard of Directors

As we’ve noted in past issues ofSCILife, NSCIA’s Business AdvisoryCommittee (BAC) is a ground-

breaking entity, signaling a paradigmshift in the way we do business withbusiness. The BAC changes the businesscommunity’s perception of people withdisabilities from the prevalent charityand rehabilitation models to their truerole as customers and prospectiveemployees who have valuable resourcesthat increase a company’s bottom line.

In two examples, NSCIA’s D.C.chapter assisted BAC member companyNorthwest Airlines (NWA) with trainingof their ground operations staff atReagan International Airport, andNSCIA past V.P. of Chapters, Pat Maheris featured on NWA’s “Air Travel forPeople with Disabilities” brochure. Inthe future, NSCIA plans to customizeequally — and mutually — beneficialrelationships with BAC members acrossa variety of sectors, including banking,telecommunications, travel, restaurants,retail, durable medical, IT, and Internetcompanies.

Lessons LearnedThe 54 million Americans with disabilities(and family, friends, colleagues) have a greatdeal of untapped purchasing power — 220million dollars in disposable income, accord-ing to U.S. Census reports. What does thatreally mean to businesses cultivating newcustomers and employees? How do they findus? Addressing these questions is one centraltask of the BAC.

This external shift in our spending powerbegs an internal shift in how we view our-selves as a labor and consumer market seg-ment. We can achieve empowerment only ifwe realign our own self-perceptions.

We must also be informed customers. If acompany uses actors with disabilities inadvertising, participates in a DisabilityMentoring Day program, or has a disability-related affinity group, how much more likelyare we to do business with them — or seek acareer with them? Do we communicate ourappreciation and encouragement with a letter,through their corporate web site, with a letterto our local newspaper editor, or just tell afriend? Those kinds of actions are powerfuland important. They become a catalyst tochange the social dynamic. Companies willtake notice, realize our growing consumerand labor market potential, and pursue usbecause we contribute to their bottom line.

The experience of other marginalizedand diverse groups — such as women,African Americans, Gay & Lesbian,Hispanic, Asian Pacific — have much toteach us, in both public policy and consumermodels. Unlike other marginalized diversitygroups, people with disabilities have noshared lineage, identity, or language, nor dowe grow up in a particular tribe, neighbor-

hood, or barrio. The disability segment ismore difficult to target and market to, so oneBAC goal is to build mutually-beneficial rela-tionships. Relationships are the basis ofeverything. To help business take notice weare starting with “a small circle of friends” —one lead company per sector.

We’ve Only Just BegunEach BAC lead company has an establishedtrack record with employment and/or mar-keting: Telecommunications (CingularWireless; Motorola); Finance (Bank ofAmerica; Citigroup); Restaurants(McDonald’s; Darden); ISP (AOL); Travel(Northwest Airlines, Princess Cruises;Cendant Car Rental — parent of Avis andBudget; Disney); IT (Microsoft; HP);Pharmaceuticals (Acorda, The sanofi-aventisGroup; Pfizer; US Micron); MedicalTechnology (Medtronic); Foundations(Craig H. Neilsen; Mitsubishi ElectricAmerica); Retail (Federated DepartmentStores — parent of Macy’s andBloomingdales; Wal-Mart); Durable Medical(Sunrise Medical/Quickie).

For two years, BAC members have par-ticipated in the Nielsen National ResearchGroup independent/EIN SOFCommunications’ “Disability CommunityMarket Research Initiative” focus groups.They are about to embark on a groundbreak-ing aspect of the initiative — a quantitativetelephone survey study that will be the basisof a White Paper which, for the first time,will identify key components of disability-friendly companies who market — with andemploy people with disabilities.

For two years, we built a solid foundationfor which we are proud. Now, as we customize

our Member Value Proposition (MVP) pro-gram, market research and services (and pro-mote those activities), we hope to make a dif-ference. One unexplored issue is the role ofNSCIA chapters and peer support networksto increase the pipeline of prospective employ-ees with SCI/D. Many are working age andwe hope to develop systems to encouragereturn to work and higher education.

Let’s Play BallThe future is up to us. Bank of America cre-ated a unique MVP promotion exclusivelyfor NSCIA members opening a new check-ing and savings account to receive up to $75(see ad, page 14). If NSCIA members roll upto the plate, it encourages other companies toconsider similar programs, building theirrecognition of us as a viable consumer seg-ment. Business is weaving an accessible wel-come mat for customers and employees. It isour responsibility to build brand loyalty.

I am honored to serve as the first BACLiaison to the NSCIA board. This is a hugeresponsibility and quite a challenge. Havingestablished “disability niche marketing cam-paigns” as a genre with our campaign for thefilm My Left Foot sixteen years ago, I haveconsulted with hundreds of businesses forthat past two decades, observing and learninghow they view the world — and disability.They are baffled, overwhelmed, and frustrat-ed with the disability community — fromdiscrepancies in language, to lack of cohesive-ness, to mixed messages. We can’t control theactions of others, but we can focus on a uni-fied SCI/D community to distinguish our-selves as valued customers and employees.

The ball is in our court. Let’s score bigfor the home team.

BAC(k) to the Future

Name

Street

City, State, Zip Phone

E-mail (very important, if available)

NSCIA Member ServicesSCILife, HDI Publishers, PO Box 131401,

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

Toll free (800) 962-9629Fax (602) 239-6268

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

The National Spinal Cord Injury Association (NSCIA) is anon-profit membership organization for people with spinalcord injuries, diseases and dysfunction, their families, theirrelated service providers, policy makers, organizations, hospi-tals and others interested in the issues affecting the spinal cordinjury community. Our Mission is to enable people withspinal cord injuries, diseases and dysfunction to achieve theirhighest level of independence, health and personal fulfillmentby providing resources, services and peer support.

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 ■ Organizational■

FREE!FREE!FREE!Contact Us

SSppiinnaall CCoorrdd IInnjjuurryy VVoolluunntteeeerrss aarree NNeeeeddeedd

The Translational Pain Research Group at the Brigham and Women‘s Hospital

is conducting clinical trials that evaluate various medications

to help relieve chronic neuropathic pain as a result of a Spinal Cord Injury.

You MAY BE eligible if you are:

18�70 years old

Have been diagnosed with a Spinal Cord Injury

Have had chronic neuropathic pain for at least 3 months

FOR MORE INFORMATION CALL FOR MORE INFORMATION CALL 1�617�525�PAIN (7246)1�617�525�PAIN (7246)

OR EMAIL US AT [email protected] EMAIL US AT [email protected]

bac


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clear and direct effect on the quality of lifeand health of the people who read thisnewspaper. Private foundations and patientadvocacy groups also should considerdirecting a portion of their grant funding tosupport translational research.

If you are frustrated about how long itis taking to move research into the clinic,then make your voice heard in

Washington. The SCI community has apowerful voice and the potential to wieldsignificant influence over key issues thataffect it. Make sure the lawmakers knowthat you expect them to support increasedfunding for pragmatic, practical, transla-tional research.

Ron Cohen, M.D. is President and CEO ofAcorda Therapeutics, a New York-basedbiotechnology company developing therapies forpeople with spinal cord injury, multiple sclero-sis, and other central nervous system conditions.

Clinical Trials for SCIContinued from page 6

rehab stays.We go to our State's web site and

browse for health-related issues. As indi-viduals living in different parts of thestate, we’ve identified our respective StateRepresentatives and Senators, also easilyfound on the Internet. When an SCI-related issue comes up, we make anappointment to meet with our StateRepresentatives and/or Senators to intro-duce ourselves and ask them where theystand. We also meet with the chairpersonof the Healthcare Committee, who has adirect effect on key legislation and canurge other Representatives or Senators tosupport a beneficial bill.

Massachusetts has a StateRepresentative who is quadriplegic andwell-known amongst his colleagues.

Although he himself doesn’t join us in ourlobbying, his mere presence in the StateHouse speaks volumes. Other legislatorswho know him well have learned muchabout his health issues and SCI.

In Massachusetts, a cross-disabilitygroup called the Disability PolicyConsortium are very active lobbyists.Their Board of Directors includes a personwith SCI who notifies us when issues per-taining to SCI come up. We also keepclose contact with SILCS (StatewideIndependent Living Centers). State officeson disability are also a great resource forSCI-related legislative issues.

My experience as a lobbyist on behalfof the SCI population in Massachusettshas been very rewarding. The GreaterBoston Chapter has helped me join agroup of similarly situated individualswho, at a beckoning call will come forward— and be effective — giving assistance fora worthwhile cause.

Lobbying for SCIContinued from page 7


REAL PEOPLEREAL CHALLENGESREAL SOLUTIONS

Abilities Expo showcases the latestproducts and services to enhance the livesof people with disabilities. Visit the freeexhibit hall packed with vendors featuringequipment demonstrations, attend freeprofessional and consumer workshops,participate in special events, and visit withlocal organizations, all under the same roof!

NAME: ________________________________________________________________________

ADDRESS:______________________________________________________________________

CITY: __________________________________________________________________________

STATE: ________________________________ ZIP: ____________________________________

EMAIL: ________________________________________________________________________

All events are wheelchair accessible.

© 2006 Questex Media Group, Inc. All rights reserved.

Questex Media provides certain customer contact data (such as customer's names, addresses, phone numbers

and e-mail addresses) to third parties who wish to promote relevant products, services and other opportunities

which may be of interest to you. If you do not want Questex Media to make your contact information available

to third parties for marketing purposes, simply call 800-331-5706 between the hours of 6 am and 7 pm (CST)

and follow the instructions to remove your name from Questex Media’s lists.

Bring coupon to any 2006 Abilities Expo and save the $5 on-site entrance

fee. Coupon must be filled out to be valid and may be photocopied for

additional registrants. For information call: (800) 385-3085.

www.abilitiesexpo.com• unlimited free passes• venue information• workshop schedule• special events• exhibitor list

Abilities Expo is sponsoredby the National Spinal CordInjury Association. Stop byand visit the booth at anyof the Abilities Expos.

ADMIT ONE

NY Metro April 21-23, 2006Edison, NJ

Southern CaliforniaJune 16-18, 2006Anaheim, CA

Metro DetroitAugust 18-20, 2006Novi, MI

Northern California November 3-5, 2006Santa Clara, CA

Texas December TBD, 2006Houston, TX

Produced andManaged by:

NSCIA

stimulation systems, others were implantedsystems with wires protruding through theskin or tunneled in the body.

Developed by researchers at the Alfred E.Mann Foundation, the BION® microstim-ulator is a new wireless device that canchange the way implantable FES systems areprovided. This tiny capsule, about the size ofa half a penny, is an implantable electrodethat may be placed near a nerve or into amuscle in a non-invasive manner and easilyextracted with a surgical instrument. It com-municates via wireless transmission to anexternal control unit. The device is currentlybeing used in multi-center clinical trialsdirected by Advanced Bionics, a division ofBoston Scientific out of Sylmar, California,for the treatment of bladder control disor-ders such as Urinary Urge FrequencySyndrome and Urinary Urge Incontinence.The electrodes help to control the variousmuscles involved in the urination process.Bioness, a neuroprosthetic and rehabilitationsystems developer, is researching the integra-tion of the BION® into prosthetic devicesfor mobility.

Clearing CoughTo cough is simple — just so you have use ofyour abdominal muscles. Coughing to clearrespiratory mucus is critical during flu andsniffle season. The team at Case WesternReserve University is developing an electricalstimulation system to produce a functionally

effective cough, using implanted electrodesnear the spinal root to stimulate abdominalmuscles. Currently in clinical trial with a firstrecipient, the system activates the electrodesto extract air from the lungs and in effect,independently cough.

Rebalancing the MindChronic pain is the silent enemy for manywith SCI. Repetitive Transcranial MagneticStimulation (TMS) uses multiple pulses ofpowerful rapidly changing magnetic fieldsto induce electric fields in the brain. Theprocess is described as “rebalancing thebrain.” With a long history of treatment fordepression, rTMS is now being studied inCanada for the treatment of chronic painwith plans to expand into the U.S. in thenear future.

Thoughts that MoveScientists have made great advances inunderstanding the human brain andthought patterns. The BrainGate™ NeuralInterface System is currently in clinical tri-als to help persons with high-level disabili-ties control such devices as computers, envi-ronmental controls, and even robotics.Using a sensor implanted on the motor cor-tex of the brain and a device that analyzesbrain signals, the system interprets andtranslates the signals into cursor move-ments. The user can control a computerwith thought. Directed by Cyberkinetics,scientists are conducting a multi-centerclinical trial for persons with spinal cordinjury, muscular dystrophy, and stroke.

The Human TouchHuman touch gets pushed aside in thefocus on movement and function.Scientists at Indiana and PurdueUniversities have sensory function frontand center. Implanted one level above andone level below the injury point, partici-pants with complete SCI received an oscil-lating field stimulation system. Significantincreases in light touch and pinprick sen-sations have been reported following thefirst round of clinical trials. Increased sen-sation can potentially help combat pres-sure sores, improve pain recognition, andeven enhance sexual function. Andara Inc.from Indianapolis, IN will soon direct thenext round of clinical trials.

There are still open questions of insur-ance, delivery methods, and, of course,FDA approval. But already new neu-rotech products have reached the marketfor wound healing, chronic pain, exercisetherapy, and yes, new functional electricalstimulation. It is an exciting emergingfield that is attracting talented researchersand engineers, as well as entrepreneurslooking to bring them to market andmake a real difference in the lives of peo-ple with SCI/D.

Jennifer French has a C6-7 SCI and is a userof the implanted stand and transfer systemdeveloped by the Cleveland FES Center. Sheis the co-founder of a non-profit organiza-tion, Neurotech Network, focusing on neu-rotechnology education. Jen is also a memberof the U.S. Disabled Sailing Team.

New in NeurotechContinued from page 1

NEUROTECH RESOURCES

BION Applicationswww.biontech.org

Advanced Bionicswww.advancedbionics.com

Bionesswww.bionessinc.com

Cleveland FES Centerfescenter.case.edu

Cough Assist studyemail [email protected]

or call 216-778-7800

BrainGate by CyberKineticswww.cyberkineticsinc.com

OFS (Oscillating Field Stimulation)for Sensory Impairment

www.andarainc.com

Learn about Clinical Trials atwww.ClinicalTrials.gov (and read Len

Zandrow’s legal advice on page 6)

Resources for neurotechnology and a database of neurotech devices can befound at www.NeurotechNetwork.org


CALIFORNIALeon S. Peter’s Rehabilitation CenterCommunity Medical Center FresnoP.O. Box 1232, Fresno, California, 93715Telephone: 559.459.6000 ext. 5783E-mail: [email protected] Contact:Ray Greenberg

CALIFORNIASt. Joseph’s General Hospital2200 Harrison Ave., Eureka, California, 95501 Telephone: 707.445.8404E-mail: [email protected]: Richard Sherry

FLORIDAFlorida Rehabilitation and Sports Medicine5165 Adanson St., Orlando, Florida, 32804 Telephone: 407.823.2967Contact: Robin KohnTelephone: 407.623.1070Contact: Carl Miller

FLORIDAHEALTHSOUTHSea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, Florida, 32901 Telephone: 321.984.4600Email: [email protected] Contact: Ellen Lyons-Olski

FLORIDAHEALTHSOUTHCapital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, Florida, 5315 Telephone: 850.656.4800Contact: JoAnna Rodgers-Green

FLORIDATampa Bay Area Support GroupHealthsouth90 Clearwater Largo Rd., Largo, Florida, 33770 Telephone: 800.995.8544 Telephone: 813.844.4286Fax: 813.844.4322Website: www.flspinalcord.usE-mail: [email protected] Telephone: 727.821.9131Contact: Barry Marshall

GEORGIAColumbus SCI Support GroupTelephone: 706.322.9039E-mail: [email protected] Contact: Ramona Cost

GEORGIAHEALTHSOUTH Central GA Rehab Hospital3351 Northside Dr., Macon, Georgia, 31210 Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223Contact: Kathy Combs

MARYLANDKernan Hospital SCI Support Group2200 Kernan Drive, Baltimore, Maryland, 21207 Telephone: 410.448.6307 Website: www.kernanhospital.com/kernanE-mail: [email protected] Contact: Lisa Wilson

MISSISSIPPIMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Telephone: 800.721.7255 Website: www.lifeofms.com Email: [email protected]: Michelle Bahret

MISSOURISouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807 Telephone: 417.886.1188 Telephone: 417.269.6829Website: www.paraquad.orgE-mail: [email protected]: Marion Trimble

OHIOHillside Rehabilitation Hospital8747 Squires Lane, Warren, Ohio, 44484 Telephone: 330.856.5861 (H)Telephone: 330.856.4303 (W)Contact: Mike Logan Telephone: 330.841.3700Contact: Sue Joy

PENNSYLVANIAHEALTHSOUTHRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Telephone: 800.873.4220

PENNSYLVANIAHEALTHSOUTHGreater Pittsburgh RehabilitationHospitalSupport group involves inpatients only 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: [email protected]: Kristy Nauman, P.T.

PENNSYLVANIADelaware Valley Spinal Cord InjuryAssociation2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Telephone: 215.477.4946Contact: Bruce McElrath

PENNSYLVANIAHealthsouth Harmarville320 Guys Run Road Pittsburgh, PA 15238 Telephone: 412.828.1300 ext # 7235 Contact: Mark Kulzer

PENNSYLVANIAMagee Rehabilitation SCI Resource & Support Group6 Franklin Plaza, Philadelphia, Pennsylvania, 19102

Telephone: 215.587.3174 Fax: 215.568.3736Website: www.mageepeers.orgContact: Marie Protesto

PENNSYLVANIAHEALTHSOUTH Rehabilitation Hospital of York1850 Normandie Dr., York, Pennsylvania, 17404 Telephone: 800.752.9675 ext. 799Telephone: 717.767.6941E-mail: [email protected] Contact: Tammy Derk

TEXASDallas/Ft. Worth SCI Support Group3908 Ovilla RoadOvilla, TX 75154Telephone: 972.617.7911

WEST VIRGINIAWest Virginia Mountaineer Support GroupP.O. Box 1004Institute, WV 25112-1004.Telephone: 304.766.4751 (W)Telephone: 304.727.4004Fax: 304.766.4849 E-mail: [email protected]: Steve Hill

If you cannot find a chapter or support groupin your area, why not start your own?Contact the National Office for assistance onour Helpline: 800.962.9629.

NSCIA CHAPTER NETWORK

NSCIA SUPPORT GROUP NETWORK

ARIZONAArizona United Spinal Cord InjuryAssociation901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006Telephone: 602.239.5929Telephone:877.778.6588Fax: 602.239.6268Website: www.azspinal.orgEmail: [email protected] Contact: Paul Mortensen

CALIFORNIAWYNGS, NSCIA7900 Nelson Rd., Panorama City, California, 91402Telephone: 818.267.3031 Fax: 818.267.3095Website: www.wyngs.orgEmail: [email protected] Contact: Michele Altamirano

CONNECTICUTConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, Connecticut, 6492 Telephone: 203.284.1045Website: www.sciact.org Email: [email protected] Contact: Bill Mancini

DISTRICT OF COLUMBIASCI Network of MetropolitanWashington, NSCIAPlaza West 9, 51 Monroe Street, Rockville, DC, 20850 Telephone: 301.424.8335Fax: 301.424.8858Website: www.spinalcordinjury.netEmail: [email protected]: Jessie ParkerE-mail: [email protected]: David Burds

FLORIDAFSCIA, Spinal Cord Support Group ofCollier County, Inc.313 Spider Lily Lane, Naples, Florida, 34119 Telephone: 239.825.9999Email: [email protected]: Mindy Adaspe

ILLINOISSpinal Cord Injury Association ofIllinois 1032 South LaGrange Road, LaGrange, Illinois, 60525Telephone: 708.352.6223Fax: 708.352.9065Website: www.sci-illinois.orgEmail: [email protected]: Mercedes Rauen

INDIANACalumet Region Chapter, NSCIA2109 Cleveland St., Gary, Indiana, 64404 Telephone: 219.944.8037Email: [email protected]: Lucille Hightower

KENTUCKYDerby City Area Chapter, NSCIA1518 Herr Ln., Louisville, Kentucky, 40222 Telephone: 502.589.6620E-mail: [email protected]: David Allgood

MASSACHUSETTSGreater Boston Chapter, NSCIAHEALTHSOUTH, New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 1801Telephone: 781.933.8666 Fax: 781.933.0043Website: www.sciboston.com E-mail: [email protected]: Kevin Gibson

NEW HAMPSHIRENew Hampshire Chapter, NSCIAP.O. Box #197, No. Salem, NH 03073Telephone: 603.479.0560 Fax: 928.438.9607Website: www.nhspinal.orgE-mail: [email protected]: Lisa Thompson

NEW YORKNew York City Chapter, NSCIA Telephone: 212.659.9369 Fax: 212.348.5902Email: [email protected]: NYCspinal.orgContact: James Cesario Telephone: 914.969-7257 (H)Telephone: 914.325-3059 (C)Contact: John Moynihan

NEW YORKGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY, 14602 Telephone: 585.275.6097Contact: Karen GenettEmail: [email protected] Telephone: 585.275.6347Contact: Kathy FlannaganEmail: [email protected]: Amy Scaramuzzino

NEW YORKNew York City Chapter, NSCIAMt. Sinai Dept of Rehab Medicine, 1 Gustave L. Levy Place, Box 1240,New York, New York, 10029Phone: (212) 659-9369Fax: (212) 348-5902Website: www.nycspinal.orgE-mail: [email protected]: James CesarioPhone: (914) 969-7257Contact: John Moynihan

NORTH CAROLINANCSCIA3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Telephone: 919.350.4172E-mail: [email protected]: Deborah Myers E-mail: [email protected]: Karen Vasquez

OHIONorthwest Ohio Chapter, NSCIA10117 Woodmont Way, Perrysburg, Ohio, 43551 Telephone: 419.872.5347Website: www.spinalrap.orgE-mail: [email protected]: Jim BeckleyE-mail: [email protected] Contact: Debra Ostrander

SOUTH CAROLINANSCIA South Carolina Chapter2009 Hampton St., Suite AColumbia, SC 29204Telephone: 866.445.5509 Toll free: 803.252.2198Fax: 803.376.4156Website: www.scscia.org

TEXASRio Grande ChapterHighlands Regional RehabilitationHospital1395 George Dieter, El Paso, TX 79936 Telephone: 915.532.3004Contact: Sukie Armendariz, Telephone: 915.298.7241Contact: Ron Prieto

VIRGINIAOld Dominion Chapter, NSCIAP.O. Box 8326 (1 st Class mail only)Richmond, VA 23226Telephone: 804.726.4990Website: www.odcnscia.orgE-mail: [email protected]: Shawn Floyd

WISCONSINNSCIA Greater Milwaukee Area Chapter 1545 S. Layton Blvd. , Rm. 320Milwaukee, WI 53215 Telephone: 414.384.4022 Fax: 414.384.7820Website: www.nsciagmac.orgE-mail: [email protected] Contact: John Dziewa

For a current listing of Chapters and SupportGroups, visit www.spinalcord.org, or call(800) 962-9629.


ARE

THE

MOVING

PART

333 North Broad Street

Fairborn, Ohio 45324 USA

(937) 879-0734 • (937) 879-5211 fax

www.ERGYS.com • [email protected]

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

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

©2005 Therapeutic Alliances Inc.

THE POWER OF YOUR MUSCLES

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

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