1Vol. 8, No. 1

National Spinal Cord Injury Associa-tion (NSCIA) and United Spinal As-sociation, two leading nonprofits with

more than 125 years of combined service to the disability community, have announced plans to merge, unifying resources to be-come the single, largest membership orga-nization dedicated to improving the lives of people with spinal cord injuries and disor-ders (SCI/D) nationwide.

The combined organization will signifi-cantly increase the membership base and will give all members access to a wide range of national programs and services, including an established community of local affiliates. Equally important will be the powerful, au-thentic consumer voice that the merger will provide at the national level.

Since 1946, United Spinal Association has been committed to protecting the rights of people with SCI/D through initiatives in advocacy and civil rights; government policy and legislation; disability travel; accessible building and universal design; publications; research and education; and wheelchair and assistive technology.

NSCIA––which educates and empow-ers people living with SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment–– serves its members through a combination of nation-al programs and a nationwide network of more than 60 chapters and support groups. NSCIA will continue to operate under its current name and brand, but will expand to become the membership arm of United Spi-

nal Association. United Spinal Association recently ac-

quired the premier wheelchair lifestyle maga-

zine New Mobility in fall of 2010, to provide the disability community unprecedented

Continued on page 5

www.spinalcord.org Vol. 8, No. 1

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

By Bob Dyer, Akron Beacon Journal columnist

At times, it seems like yesterday. Other times, it seems like a whole different life — which, in a sense, it was.The year was 1987. John Squires was 15

years old and having a blast.A wrestler and football player, he was

stocked with confidence, fire and bound-less energy. The Barberton (OH) teen had started summer football practice at his new school, St. Vincent-St. Mary, where he hoped to make an impact as a fullback and linebacker.

Then, everything changed.On a hot, humid, sun-drenched Mon-

day in late July, John was cooling off with two pals at Portage Lakes State Park.

They were swinging out over the water on a rope and diving in head-first. As John grabbed the rope and swung out, he hesi-tated at the end of the arc, swung back a bit and ended up diving short of his target. His head landed squarely on a buddy’s hip.

The buddy, Jason Friend, wasn’t hurt, but Squires snapped his neck and was in-stantly paralyzed. If not for Friend quickly diving down to pull him out, he would have drowned.

His recovery was agonizingly slow — a year and a half at Edwin Shaw Hospital, followed by another 31/2 years of outside rehab before he could come close to func-tioning on his own.

Squires didn’t spend much time feeling sorry for himself, though. He was too stub-born.

Still is. And that’s the main reason officials at the Cleveland Marathon have changed their minds and will reinstate a wheelchair division for this year’s race, set for May 15.

But more on that in a minute. First, you need to know where Squires has come from to appreciate where he’s coming from.

After the accident, he left St. V-M and returned to the Barberton system. Then it was off to Kent State, from which he gradu-ated in 1996 with a degree in psychology.

He also returned to his athletic roots. At first, he was limited to light hand-cycling as

part of his rehab. After growing stronger, he formed Kent State’s first wheelchair rugby team. He added skiing to his repertoire and helped organize a group called Three Trackers that today regularly plies the slopes at Bran-dywine.

Then, just last year, he became a mara-thoner.

Wheelchair racers generally fall into two categories: “rim-pushers,” who ride relatively traditional chairs and thrust their hands down-ward on the wheels, and “hand-crankers,” who ride low to the ground, tilted backward at a 40-degree angle, and propel themselves by do-ing the rough equivalent of lat pulls.

Continued on page 6

United Spinal Association and National Spinal Cord Injury Association to Merge to Better Serve People with Spinal Cord Injuries and Disorders (SCI/D)s

After Fight, Local Man Set to Roll in Marathon John Squires inspects his Top End Force Racing Hand cycle.

2 Vol. 8, No. 1

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3Vol. 8, No. 1

SCILIFE STAFFMANAGING EDITOR: K. Eric LarsonDESIGN AND LAYOUT: Nikolai AlexeevADVERTISING SALES: Megan BellDATA INPUT: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFF CHIEF EXECUTIVE OFFICER: K. Eric Larson RESOURCE CENTER MANAGER: Bill FertigINFORMATION SPECIALIST: Daniela CastagninoINFORMATION SPECIALIST: Charleene FrazierWEB SERVICES/PUBLISHING: J. Charles Haynes, JDWEBMASTER: Nikolai Alexeev

BOARD OF DIRECTORS Executive CommitteePRESIDENT: Patrick MaherIMMEDIATE PAST PRESIDENT: Harley Thomas (1939 – 2007)CHAIR, EXECUTIVE COMMITTEE: Andy HicksVICE-PRESIDENT FOR CHAPTERS: David EstradaSECRETARY: Janeen EarwoodTREASURER: David EstradaCEO/EXECUTIVE DIRECTOR: K. Eric LarsonVICE-PRESIDENT FOR COMMUNICATIONS: Paul AronsohnVICE-PRESIDENT FOR DEVELOPMENT: Carmen DiGiovine, PhDVICE-PRESIDENT FOR MEMBERSHIP: Debbie Myers

Directors Mary BroonerJohn FioritiGretchen FoxChristine N. Sang, M.D., M.P.H

General CounselLeonard Zandrow, Esquire

SCILife PUBLISHERPUBLISHER: J. Charles Haynes, JD

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

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

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

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

If you have any questions related to your membership with NSCIA, or would like to join, contact us atHDI Publishers, PO Box 131401, Houston, TX 77219-1401,e-mail: membership@spinalcord.org, fax: 713.526.7787, or phone us toll free at 800-962-9629.

For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401voice: 713.526.6900fax: 713.526.7787email: info@spinalcord.org or website: www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston

TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787

email: chaynes@hdipub.comwww.hdipub.com

SCILife © 2011

GOLDCOLOPLAST www.us.coloplast.com

INVACAREwww.invacare.com

MOBILITY WORKS www.mobilityworks.com

PRIDE MOBILITYwww.pridemobility.com

SUNRISE MEDICALwww.sunrisemedical.com

UNITED SEATING AND MOBILITYwww.unitedseating.com

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THE ROHO GROUPwww.therohogroup.com SYNAPSE BIOMEDICALwww.chesrehab.com

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MYPLEASURE www.mypleasure.com

SCOOTAROUND www.scootaround.com

TILITE www.tilite.com

WYNG PRODUCTS www.wyngproducts.com

NSCIA BUSINESS MEMBERSIf the businesses you patronize are on this list, please thank them for supporting you and your fellow NSCIA members. If they aren’t on this list – ask them to join today!

Acknowledgements on our web site, SCILife, SCI e-news or any other NSCIA publication should not be considered as endorsements of any product or service. It is the individual’s responsibility to make his or her own evaluation of such.

www.spinalcord.org/business

from the executive director Change – What have we Made of it? By K. Eric Larson, Executive Director and CEO, NSCIA

In my first column in SCILife after ac-cepting the position of Executive Di-rector in late 2008, I said “Change for

NSCIA… will be what we make of it.” At that time,

we were facing a huge economic downturn and financial chal-lenges so serious that at one point our board of di-rectors and I had to consider the possibility of shutting down

operations. Of course, we decided against that. A long hard look at the situation reaf-firmed that not only was the NSCIA mis-sion important enough to fight for, no oth-er organization was in a position to ensure that mission continued.

So we moved forward! At the same time, the board and I understood we need-ed to find a substantial and long term so-lution to NSCIA’s survival and well being.

I’m very happy to report that since then, we’ve not only kept our doors open, but we’ve in fact had great success and growth in all three key areas of our operations: our resource center, public policy and advoca-

cy, and our membership and Chapter ser-vices. And out of that operational success has come the formula for out next truly big step as an organization – merging with United Spinal Association to become the single, largest membership organization dedicated to improving the lives of peo-ple with spinal cord injuries and disor-ders (SCI/D) nationwide.

United Spinal has been an open, sup-portive and trusting partner over the past three years. We have successfully collabo-rated in key areas. Our organizations co-founded Spinal Cord Central, a web-based SCI/D resource center in 2008 and we have been working to forward a common public policy agenda through Spinal Cord Advocates — their joint public policy initiative with a shared Washington, D.C.-based office. In 2007, United Spinal and NSCIA created the Spinal Cord Leaders Council, which is comprised of leaders from various organiza-tions that advocate for, treat and conduct research on behalf of people with SCI/D.

As collaborative partners, we have dem-onstrated that we can work effectively to-gether. Now is the time to formalize that partnership in a way that best serves the community of which we have both been a part for nearly 65 years.

NSCIA and United Spinal share a com-mon mission focused solely on empower-ing people living with paralysis to achieve the highest possible quality of life. Our ca-pabilities and operations are more comple-mentary than competitive. And, we value and respect each other as organizations, and as individuals. That’s what has always driven us, and that is the foundation upon which we are building.

United Spinal CEO Paul Tobin and I share a passion for that mission and I wel-come Paul’s leadership moving forward as president and CEO of our combined or-ganization.

NSCIA will continue to operate un-der its current name and brand, but will expand to become the membership arm of United Spinal Association. I am very excited about the opportunity to continue to lead NSCIA, and to take on additional responsibilities as senior vice president for membership and chapter services within United Spinal Association.

This merger will give our Chapters and Support Groups a stronger national part-ner, one that is committed to their growth and success as independent organizations that have evolved out of local needs and lo-cal passions to fulfill a shared mission with NSCIA. This national network of local af-filiates will connect directly with our com-bined membership to significantly improve the quality of life for people living with spinal cord injuries and disorders.

The combined organization will signifi-cantly increase our membership base and will give all members access to a wide range of national programs and services, includ-ing an established community of local af-filiates. Equally important will be the pow-erful, authentic consumer voice that the merger will provide at the national level.

We’ll have even greater ability to protect the rights of people with SCI/D through initiatives in advocacy and civil rights; government policy and legislation; disability travel; accessible building and universal design; publications; research and education; and wheelchair and assis-tive technology.

Much will change. But our mission will remain the same – to empower people liv-ing with SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment

It’s as true today as it was 2 ½ years ago – change will be what we make of it. And I invite you to join us in that process in whatever ways you can.

4 Vol. 8, No. 1

sports

Fair Winds and Following Seas By Lynn Fitzpatrick, Argo Challenge

The Argo Challenge, a team of sailors and athletes, both with disabilities and able-bodied, are mustering all of their

resources to compete in the America’s Cup, the oldest trophy in international sports and one of the most high-profile sporting events in the world.

The America’s Cup extravaganza ranks immediately behind the Olympics and the FIFA World Cup in terms of economic im-pact. In trying to win the America’s Cup, the Argo Challenge wants to inspire every-one who has ever had a set back to persevere and take a step forward. The skipper and the crew are tenacious, determined, empowered and accomplished.

Antonio Spinelli, who coaches skiers with disabilities and conceived of the Argo Challenge, said, “The America’s Cup is the most visible sporting event in the world in which to demonstrate that people of varying abilities are exceptional athletes. They can play a game of chess on the water as well as those who have been identified as the ‘best

sailors’ to sail ‘the fastest boats’. “The team’s skipper, Lars Grael goes toe-

to-toe with the best helmsmen and skippers on all types of boats, and there isn’t a sin-gle person who has sailed against him who would ever count him out in a regatta. Lars thought long and hard before agreeing to join the Argo Challenge and did so on one condition. To quote Lars, “The team can not be looked upon as bears in a circus. We must enter the America’s Cup to win it.”

Lynn Fitzpatrick, who will attend the Los Angeles Abilities Expo on April 15-17, 2011, said, “The Argo Challenge represents a tremendous opportunity for the America’s Cup and sailing to be leaders in the in-ternational sports community and touch a large portion of an under-represented global population. We see our association with Abilities Expo as reciprocal. Abilities Expo introduces a large population to sail-ing and the America’s Cup. Our team will plan events similar to Abilities Expo at the international competition venues over the next 2.5 years so that we can showcase what our colleagues with varying abilities have to offer the world.”

Numerous accomplished athletes and sailors—with and without disabilities—have expressed interest in joining the Argo Challenge. Argo’s rule is that you have to be able to do your job as well as an able-bodied athlete to be considered. Recognizing how powerful these boats are, Argo fully expects to be a mixed team of athletes and sailors, especially during the early development and training stages. Argo is looking for strong and agile athletes. They don’t have to be sail-

ors, but they have to have the WeCanUCan attitude and be team players.

Brilliant lawyers, scientists, finance and marketing professionals have volunteered to join the Argo Challenge while during its in-tense fund-raising period. They have joined because they believe in everything that this team can accomplish and the inspirational message that it can send to the world.

Argo’s ultimate goal is to win the Amer-ica’s Cup, but there is a lot that they will accomplish along the way. They know that the community of people with disabilities will win as long as the team makes it to the starting line. “There are far grander prizes to be achieved by the Argo Challenge than winning the America’s Cup,” says Fitzpat-

rick. “Argo will try our best not to let our fans down and hopes to expand its fan base exponentially.”

Fitzpatrick continued, “Argo is dedi-cated to giving back to the community and is ensuring its potential sponsors and alli-ance partners that a portion of everything raised will be repatriated to the community of people with disabilities. In some cases, funds will go to adaptive sailing. In others, resources will go to empowering the Com-munity and celebrating its members’ perfor-mances in arts, fine arts, sports and other accomplishments and objectives.”

Argo invites you to join the cause on ArgoChallenge.com, Facebook, Twitter and other social media outlets.

CALIFORNIACASA COLINA CENTERS FOR REHABILITATIONPomona, CA(909)596-7733

NORTHRIDGE HOSPITAL MEDICAL CENTERNorthridge, CA(818) 885-8500 Ext. 3669

COLORADOTHE ROCKY MOUNTAIN REGIONALSPINAL INJURY SYSTEM-CRAIG HOSPITALEnglewood, CO(303) 789-8306

WASHINGTON, DCNATIONAL CAPITAL SPINAL CORD INJURY MODEL SYSTEMNational Rehabilitation Hospital Washington, DC(202) 877-1425(202) 877-1196

FLORIDA BROOKS REHABILITATION HOSPITAL-UNIVERSITY OF NORTH FLORIDAJacksonville, FL(904) 858-7600

PINECREST REHABILITATION HOSPITAL (CARF)Delray Beach, FL(561) 495-0400

GEORGIAGEORGIA REGIONAL SPINAL CORD INJURY CARE SYSTEM-SHEPHERD CENTER, INC.Atlanta, GA(404) 350-7591

ILLINOISMEMORIAL MEDICAL CENTER. NEUROMUSCULAR SCIENCES & ORTHOPEDIC SERVICES Springfield, IL 217-788-3000

INDIANA REHABILITATION HOSPITAL OF INDIANA Indianapolis, IN317-329-2000

KENTUCKY CARDINAL HILL REHABILITATION HOSPITALLexington, KY(859) 254-5701

MARYLAND ADVENTIST REHABILITATION HOSPITAL OF MARYLANDRockville, MD (240) 864-6000

KENNEDY KRIEGER INSTITUTE Baltimore, MD(443) 923-9200

KERNAN ORTHOPEDICS AND REHABILITATIONBaltimore, MD(888) 453-7626

MICHIGANMARY FREEBED REHABILITATION HOSPITAL Grand Rapids, MI(616) 242-0343

UNIVERSITY OF MICHIGAN MODEL SPINAL CORD INJURY CARE SYSTEMAnn Arbor, MI(734) 763-0971

MISSOURI THE REHABILITATION INSTITUTE OF KANSAS CITYKansas City, MO(816) 751-7900

NEBRASKAIMMANUEL REHABILITATION CENTER Omaha, NE(402) 572-2121

MADONNA REHABILITATION HOSPITALLincoln, NE (402) 486-8296

ALEGENT IMMANUEL REHABILITATION CENTEROmaha, NE(402) 572-2121

NEW JERSEY NORTHERN NEW JERSEY SPINAL CORD INJURY SYSTEMKESSLER INSTITUTE FOR REHABWest Orange, NJ (973) 243-6849

NEW YORKMOUNT SINAI SPINAL CORD INJURY MODEL SYSTEMNew York, NY(212) 659-8587

NORTH CAROLINAJ. PAUL STICHT CENTER ON AGING AND REHABILITATIONWinston-Salem, NC(888) 605-9568

MOSES CONE HEALTH SYSTEMGreensboro, NC(336) 832-7000

CAROLINAS REHABILITATIONCharlotte, NC (704) 355-4300

OHIONORTHEAST OHIO REGIONAL SPINAL CORD INJURY SYSTEMCleveland, OH(216) 778-8781

PENNSYLVANIAUPMC INSTITUTE FOR REHABILITATION & RESEARCH Pittsburgh, PA(877) 287-3422

THE WILLIAMSPORT HOSPITAL AND MEDICAL CENTERGIBSON REHABILITATION CENTERWilliamsport, PA. (570) 321-1000

SOUTH CAROLINA HEALTHSOUTH REHABILITATION HOSPITALColumbia, SC(803) 254-7777

TENNESSEE PATRICIA NEAL REHABILITATION CENTERKnoxville, TN(865) 541-3600

TEXASBAYLOR INSTITUTE FOR REHABILITATION Dallas, TX. (800) 422-9567

TIRR MEMORIAL HERMANN (THE INSTITUTE FOR REHABILITATION AND RESEARCH) Houston, TX (713) 799-5000

Texas Health Harris MethodistForth Worth, TX(817) 820-4800

VIRGINIAINOVA MOUNT VERNON HOSPITAL Alexandria, VA703-664-7592

WISCONSIN FROEDERT MEMORIAL LUTHERAN HOSPITALMilwaukee, WI(414) 805-3000

ORGANIZATIONAL MEMBERS OF NSCIAFLORIDA SCI RESOURCE CENTERSt. Petersburg, FL (866) 313-2940

PROJECT WALKCarlsbad, CA(760) 431-9789

PUSH TO WALKRiverdale, NJ(862) 200-5848

Quest to WalkOverland Park, KS (913) 451-1500

HOSPITAL MEMBERSNSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people

with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their web sites, and information on how your hospital can join NSCIA.

5Vol. 8, No. 1

from the president

By Patrick Maher, President, NSCIA Board of Directors

Recently I was fortunate enough to be part of a contingent of technology start-up leaders who had a roundtable

discussion with Senator Dick Durbin (D, IL) at Tech Nexus in Chicago on the dire challenges that my home state faces to keep our tech-nology leaders in-state. I was invited as the

founder of ITKAN – Illinois Technology Knowledge Abilities Network – a network-ing and training association for candidates and professionals with disabilities into the technology industry. Frankly, I was the odd guy out among this group of both younger - and seasoned – technology entrepreneurs, so I sat back and listened to what proved to be a charged and insightful conversation.

Before I share my thoughts on the dis-cussion itself, I’d like to make one observa-tion that hit me squarely in the face. My city and state are pulsing with technology en-trepreneurs! There were at least 15 separate technology start-up CEOs in that room, many of whom had succeeded in launch-

ing multiple technology companies. Their names were as creative as their solutions; Flyover Geeks, Timelines, Trademonster and Fee fighters. It was gratifying to be in a room of genuine entrepreneurs willing to collateralize everything they owned for the sake of the opportunity to succeed in deliv-ering a novel product or service with tech-nology – either in construction or delivery – at its heart.

Confidence and Initiative While there was respect for Senator Durbin, none of these highly driven, success focused business owners were intimidated by, or in awe of, the U.S. Senator. As we quickly shared our elevator bios with him, it was also evident that this group possessed almost unnerving confidence – the type of confi-dence that I’d like to bottle and hand deliver to any of our candidates with disabilities looking toward a career opportunity. The type of confidence borne of hard work, trial and error, long hours and a steadfast belief in their abilities. It was as if each of them was looking one of the one hundred most influential people in our country unblink-ingly in the eyes and saying, “You need what I have to sell”. This was an inspired group.

By way of his introduction, Senator Durbin confessed to a lack of any deep technology aptitude and, in contrast to the entrepreneurs, being a bit in awe of some of the technology products and services that they were delivering. He noted that he was a lawyer by trade, and of course a senator by

practice. He then went on to share some ex-periences that he’d had related to the United States entrepreneurial spirit, the current aca-demic challenges in our nation, and finally a thorny suggestion that, one belief he held firmly related to technology and its many wonderful benefits, was that internet com-merce had grown up and needed to start “playing with the big boys” – meaning pay-ing sales taxes alongside its bricks and mor-tar counterparts.

First, on U.S. creativity and brainpower; the U.S., being embarrassed by the success of the Soviets launching the first space satellite – Sputnik – in 1957, ultimately developed GPS by studying and applying the Doppler effect of the satellite’s frequency relative to its proximity to an object on earth at a point in time. The applied physics lab staff at Johns Hopkins developed Transit satellites begin-ning in the late ’50s first to track the position of our Polaris nuclear submarines and then other ships in naval service. The National Defense Education Act (NDEA) was created in 1958, primarily to assure that the nation had adequate mathematicians and scientists to support national defense, but more im-portantly it infused the nation’s colleges with much needed financial support to reestablish its preeminent position in STEM graduates. The senator was clearly suggesting that we needed to apply just that type of collective knowledge, drive and determination to re-claim leadership in STEM fields globally.

It Starts in the ClassroomOn academic standing and STEM careers; A few years ago Senator Durbin attended a graduation ceremony at the Illinois In-stitute of Technology. He came away con-cerned that many of the graduating seniors, who were citizens of other nations going to school on student visas, were planning to return to these countries following their graduation. The U.S. still has the preemi-nent bachelor, graduate and doctoral level institutions in the world, but we must retain as many of these newly minted graduates as we can if we are to be globally competitive. He challenged us - as a nation - to support

keeping these newly minted, highly knowl-edgeable grads in their newly adopted na-tion to support that global competitiveness. He intimated that unless we regain a posi-tion of prominence in these critical fields, fields that drive actual creation of technolo-gies, we’ll continue to witness previously un-heard of developments like China establish-ing a manufacturing plant in Rockford.

While this might rankle some, consid-ering the challenges that many of our U.S. born students have getting accepted into the more competitive programs, I agree that we shouldn’t just sit by passively and wave goodbye to some of the brightest young minds as they leave for other shores. Our universities are analogous to our businesses in that they have invested heavily in these young resources only to sit idly by while they take that knowledge to a competitor. Why not try to make that investment pay off for our nation?

On e-commerce and leveling the play-ing field, the senator responded to a ques-tion on Illinois’ “Amazon Tax” which seeks to apply a sales tax to any company’s on-line sales in Illinois. The tax is already in place in some states. This is vehemently opposed by the tech community since it would put the state at a distinct disadvantage in luring start-ups and existing companies with sig-nificant on-line sales. Senator Durbin not-ed the dilemma and indicated that he and other members in the senate were working on a proposal at the federal level that would level the playing field for all e-commerce nationally.

My greatest take away from this discus-sion was that, despite the many daunting challenges that these entrepreneurs faced to succeed, to a one they appeared committed to that effort – or more accurately impas-sioned by it. They fed off of one another’s energy and creativity. This is the feeling that I’d love all students and candidates within the STEM disciplines to experience. If you are fired with this level of commitment and passion, this belief in yourself and your abil-ity, then your ultimate success is as certain as anything can be in our world.

Spinalcord.org is looking for

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Please contact us at volunteer@spinalcord.org

Competing for STEM (science, technol-ogy, engineering and mathematics) Supremacy…Another Sputnik?

United Spinal Association...Continued from page 1 access to information, resources and oppor-tunity.

“Together, our organizations can be a stronger advocate on behalf of our commu-nity and directly respond to the needs of our members,” says Paul J. Tobin, president and CEO of United Spinal Association. “Unit-ed Spinal brings a legacy of public policy and advocacy on behalf of the community, and NSCIA brings greater direct access to the community through its chapters and public support networks.”

Tobin will continue in his capacity as president and CEO to lead the combined organization.

“Our national network of local affiliates will connect directly with our combined membership to significantly improve the quality of life for people living with spinal cord injuries and disorders,” says K. Eric Larson, NSCIA executive director and CEO, who will take on additional respon-

sibilities as senior vice president for mem-bership and chapter services within United Spinal Association. “That’s what has always driven us, and that is the foundation upon which we are building.”

United Spinal Association and NSCIA have successfully collaborated in key areas during the past three years. The organiza-tions co-founded Spinal Cord Central, a web-based SCI/D resource center in 2008 and have been working to forward a com-mon public policy agenda through Spinal Cord Advocates––their joint public policy initiative with a shared Washington, D.C.-based office. In 2007, United Spinal As-sociation and NSCIA created the Spinal Cord Leaders Council, which is comprised of leaders from various organizations that advocate for, treat and conduct research on behalf of people with SCI/D.

National Spinal Cord Injury Association (NSCIA) (www.spinalcord.org). Formed in 1948, NSCIA is the nation’s oldest and largest civilian organization dedicated to improving the quality of life for all Americans living with the results of spinal cord injury and disease

(SCI/D) and their families, from the onset of injury or disease and throughout all stages of life. NSCIA provides information and resourc-es to individuals with SCI/D, their families, healthcare professionals, and service providers through a combination of national programs and a nationwide network of more than 60 chapters and support groups.

United Spinal Association (www.unit-edspinal.org). United Spinal is a national 501(c) (3) nonprofit membership organiza-tion formed in 1946 by paralyzed veterans and is dedicated to improving the quality of life for all Americans with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, ALS and post-polio. It played a significant role in writing the Americans with Disabilities Act, and made important contri-butions to the Fair Housing Amendments Act and the Air Carrier Access Act. Membership is free and is open to all individuals with SCI/D. United Spinal was instrumental in getting New York City to create sidewalk curb ramps and accessible public transportation that has been used as a model for many United States cities.

6 Vol. 8, No. 1

After Fight...Continued from page 1

Squires, who is classified as a “high-level quadriplegic’’ because he has only limited use of his hands and arms, is one of the latter. He can’t open his hands wide enough to shake, but he can wrap them around the handlebars of his $6,000 chair and ride like the wind — tires willing.

In last year’s Columbus marathon, Squires blew his left rear tire three times. After the first flat, he had to ride on the rim for seven miles before he could hook up with someone able to fix it. But Squires simply refused to quit. He finally rolled over the finish line after four hours and 40 minutes.

Typically, he can cover the 26 miles in 21/2 or 3 hours. Some wheelchair mara-thoners can finish in as little as 75 min-utes, and on downhill stretches can reach speeds as high as 40 mph — which, while a thrill for the racer and spectators, can cre-ate safety issues.

Still, as Squires points out, wheelchair divisions are offered in the nation’s three biggest marathons — Boston, New York and the Ironman competition in Hawaii — as well as smaller races such as Akron’s, Dayton’s and Detroit’s.

Declares war But when he tried to sign up this year for Cleveland, he was told he couldn’t race be-cause no wheelchair division was being of-

fered. Squires was livid. He embarked on a PR war, haranging the marathon’s top offi-cials as well as contacting national organiza-tions, fellow wheelchair athletes and people like me.

He says there is simply no legitimate reason a well-oiled operation like Cleve-land’s can’t accommodate wheelchairs.

“Do race directors love it? Probably not, because it’s one more headache they have to deal with. But you know what? That’s too bad. We train our butts off to do this stuff and we should be able to do it.

“And, quite frankly, we’re a big draw. People love to see the guys in the chairs fly-ing by. It’s inspiring.’’

Squires, now 38, is sitting in a regular wheelchair in the kitchen of the attractive ranch home he shares with his primary training partner and wife of three years, Annalisa, in a new housing development in Coventry Township. He has a thick head of dark hair and a neatly trimmed beard. As he talks about his latest sports passion, inten-sity flies from his green eyes.

That intensity has been felt by Jack Staph, president of the Cleveland Mara-thon. After initially telling Squires the wheelchair division couldn’t be reinstated because the division’s sponsor had dropped out and the resources were simply not available, Staph has changed his tune.

“Our only concern is their safety,’’ he told me this week. “It’s difficult to keep them safe...

“Sometimes these wheelers go faster than the lead vehicles. You have to close the course in front of them and sometimes it’s

hard to close down the course so quickly.’’However, after another half-dozen

wheelchair jocks said they wanted to race (some of them encouraged to speak up by Squires), “we said, ‘Well, let’s take a look at it.’”

Good to go Squires says Staph called him the day after our conversation and said a wheelchair di-vision definitely would be added but that it probably would have to be capped at 10 to 12 participants. Squires, Staph and Staph’s son, Race Director Ralph Staph, will meet next week to hammer out the logistics.

Each wheelchair rider needs a strong bicyclist riding with him, about 20 yards ahead and armed with a whistle to make sure the coast is clear. (If you’d like to be among the volunteers, call Squires at 330-807-7977.)

Although Squires is reasonably satis-fied with the outcome, he doesn’t think he should have been forced to jump through hoops.

“To me it’s all about inclusion,’’ he says. “I work my butt off year-around. I have to train three times as hard as an average mar-athoner just because I’m using a quarter of the muscles they have in their body. I do it all from the chest up. When somebody tells me I can’t compete, it’s just not right.’’

Squires’ assertiveness has helped keep him financially self-sufficient. He sells real estate, which he started doing right out of college, and also works part-time under-writing contracts and giving motivational speeches.

Biggest goal Self-motivation drives him to work out six days a week, spending an hour each day on weight training and another hour on car-diovascular exercise.

Squires soon leads his visitor to a spare bedroom that he refers to as his gym. It contains an array of fancy exercise equip-ment. On the walls are newspaper clip-pings trumpeting past wheelchair sports achievements, along with photos of legend-ary bodybuilder Arnold Schwarzenegger.

In one corner of the room is a device called a “standing frame.’’ You put your feet in the stirrups, wrap a strap across your butt and pump yourself up to a standing position. Squires uses it every day to stretch his back and legs.

“It’s really good for your bones,’’ he says. “Gotta be ready for when I get out of this chair some day.’’

Gonna happen? “I hope so. I never give up hope on that. So I stay in the best shape I can. I do everything I can do.’’

He certainly seems to.And if he sometimes comes across as a

little bit pushy, can you blame him?

Bob Dyer can be reached at 330-996-3580 or bdyer@thebeaconjournal.com. Reprinted with permission of the Akron Beacon Journal and Ohio.com.

Squires and his team will compete as part of Team NSCIA. To learn more or to volunteer, contact 800-962-9629.

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7Vol. 8, No. 1

public policyFEMA And NDRN Sign Agreement To Strengthen Collaboration

On Friday, March 11, the Department of Homeland Security’s Federal Emer-gency Management Agency (FEMA)

and the National Disability Rights Network (NDRN) signed a memorandum of agree-ment that further strengthens their growing partnership to ensure that the access and functional needs of people with disabilities are incorporated into all aspects of planning for, responding to and recovering from disas-ters. Today’s signing was hosted by the White House, and was attended by advocates from the disability and emergency management community, including disaster survivors, as well as national security and disability advi-sors for President Obama.

“FEMA is just one part of the emergency management team,” said FEMA Adminis-trator Craig Fugate. “The President and I are fully committed to addressing the needs of people with disabilities, in part by ensur-ing that Americans with disabilities - critical members of our team - have a seat at the table to make sure we are serving and protecting all of the members of our communities equally, before, during and after a disaster.”

While FEMA has coordinated with the NDRN in the past, this agreement will strengthen their relationship to ensure the needs of people with disabilities, young chil-dren, seniors, and all members of the com-munity are fully integrated into emergency planning efforts. Specifically, the agreement will ensure that advocates for the NDRN’s 57 state and territory affiliates have access to FEMA disaster response offices, includ-ing workspace and logistical support, before,

during and after a disaster, to be involved in policy decisions and coordinate directly with the entire emergency management team. This partnership will help FEMA leverage the resources of the entire community, including the resources the NDRN or other organiza-tions can offer, to better meet the needs of the entire population impacted by a disaster.

FEMA’s mission is to support our citizens and first responders to ensure that as a na-tion we work together to build, sustain, and improve our capability to prepare for, protect against, respond to, recover from, and miti-gate all hazards.

“NDRN and our Disability Rights af-filiates are a valuable source of knowledge to disaster officials at all levels, and will help en-sure that individuals with disabilities can sur-vive and recover from a disaster,” said NDRN Executive Director Curt Decker.

Improving how FEMA plans for and in-corporates the needs of people with disabili-ties into all aspects of disaster operations has been a top priority for the Obama admin-istration and Administrator Fugate. In the immediate aftermath of Hurricane Katrina then-Senator Barack Obama introduced legislation that directed the Secretary of Homeland Security to ensure that each state provided comprehensive information regard-ing plans for evacuating individuals with dis-abilities and a variety of access and functional needs, and to plan for providing food, water, and shelter for evacuees with disabilities or access and functional needs.

Early last year, Administrator Fugate es-tablished the first-ever office within FEMA focused on this goal, the Office of Disability Integration and Coordination, now lead by Marcie Roth, former executive director of NSCIA. In July 2010, FEMA signed a mem-orandum of agreement with the National Council on Independent Living which allows the 450 centers for independent living from across the country to access FEMA disaster re-covery centers in order to better assist people with disabilities impacted by a disaster. In September 2010, FEMA hosted its first-ever

“Getting Real” conference, which brought together stakeholders from the disability and emergency management communities to dis-cuss how we can better partner together and integrate the needs of people with disabilities into our emergency planning. And in No-vember 2010, FEMA announced new guide-lines, the Functional Needs Support Services Guidance, on general population emergency sheltering for people with access and func-tional needs.

“Many of you may remember us marking the 20th anniversary of the Americans with Disabilities Act this past July in a wonderful and moving event at the White House, said Heidi Avery, deputy assistant to the presi-dent for homeland security on the national security staff, in a blog entry shortly after the March 11 signing. “On that day, we reflected on how far this historic law brought us in living up to our civil rights promises for all Americans – and how far we still have to go to make sure that every person in this coun-try – regardless of their race, background, income and whether or not they have a dis-ability – has equal access to all of the oppor-

tunities our great nation has to offer.”“It sounds like common sense,” Avery

continued, “but the unfortunate truth is that for years the needs of people with dis-abilities were more of an afterthought during disasters. Not enough was done to make sure that shelters planned for the access and func-tional needs of individuals who might require wheelchairs to be replaced or beds at a certain height if it was necessary to evacuate during a disaster. Residents who were blind or deaf, and those with intellectual disabilities didn’t have access to critical information about evacuation routes or other warnings. And in some cases, accessible transportation for peo-ple with disabilities just wasn’t factored into planning at all.

“President Obama put it best during his remarks seven months ago. Equal access and equal opportunities are common principles, no matter who you are. And they need to ap-ply to every aspect of our lives, whether at school, at work, in our homes, or when an emergency happens. Today was another im-portant step forward in that journey. And tomorrow, we begin again.”

legalWhen Risky Behavior Leads to Strict Liability

By Len Zandrow, NSCIA General Counsel

As a general rule, persons seeking to recov-er civil damages for spinal cord injuries or other serious injuries must prove that

the responsible party was negligent. In this regard, negligence is typically defined as the failure to exercise reasonable, ordinary care in the circumstances.

If the responsible party is a professional who caused harm while acting in his or her field (medicine, engineering, etc.), an expert witness in that same field typically must tes-tify about the degree of care applicable in that profession. Otherwise, the standard of care is usually determined by jurors applying com-mon sense standards of reasonableness in the totality of circumstances.

In some situations, however, the law has

identified certain categories of risk that are either so important or so dangerous that li-ability may be imposed on responsible parties even in the absence of negligence. In these cases, principles of so-called “strict liability”

govern, and par-ties may be held accountable re-gardless of tradi-tional notions of fault. To recover in these situa-tions, a plaintiff need only show a causal connection between his or her damages and

the responsible party’s conduct. This article briefly identifies some of the most common categories of strict liability.

Ultra-hazardous Activities. Strict liabil-ity is often imposed on land owners who take abnormal risks of serious harm that cannot be eliminated even with the exercise of ut-most care. Such activities include the storage of large quantities of inflammable liquids, the use of explosives or fireworks, unusual min-ing or drilling operations and the creation of other substantial nuisances on premises. When deciding whether or not a particular activity is abnormally dangerous, courts often

compare the conduct involved to the general character of the surrounding area or neigh-borhood.

Product Liability/Consumer Rights. A manufacturer or retailer who sells defec-tive and dangerous products or appliances may be strictly liable to consumers or users for physical harm caused by those products. This theory of strict liability also applies in the work place to employees injured by defec-tive products and machinery supplied by de-fendants other than their employers. In some contexts, liability is based on common law or warranty theories. In others, liability is based on statutes and related regulations.

Liquor Liability. A number of states impose strict liability on the sellers of intoxi-cating liquors, when the sale results in harm to a third party injured by the buyer’s intoxi-cation. Under so-called “Dram Shop” stat-utes and evolving common law principles, fault can be assessed upon retailers, taverns or bartenders for supplying liquor to persons who are already intoxicated or under the legal drinking age. In some states, liability is also imposed on social hosts for serving alcohol to intoxicated or underage drinkers who then injure third parties as a result of their dimin-ished capacity.

Aircraft. In general, owners and opera-tors of aircraft are strictly liable for personal

injuries caused by the ascent, descent or flight of airplanes or by the dropping or falling of objects from aircraft. These principles ap-ply to “normal” aviation, like commercial air flights, as well as “abnormal” aviation, such as stunt flying, crop dusting and experimental aircraft.

Animals. The law in most jurisdictions distinguishes between “wild” animals, who are not customarily devoted to “the service of mankind” when and where they are kept, and “domestic” animals, such as dogs and cats, who are more traditionally associated as pets. Typically, owners and keepers of wild animals are strictly liable for any personal in-juries that their animals cause, regardless of the reasonable care and restraints they may have used. Owners and keepers of domes-tic animals may also be strictly liable unless the injured plaintiff was either committing a trespass or teasing or tormenting the animal at the time of injury.

The above discussion provides only a broad overview of the most common cat-egories of strict liability. There may be other categories that apply in your state and to your circumstances. The law in these particular categories, moreover, differs from state to state, so you may wish to consult an attorney for specific advice on the additional factors and exceptions that may govern.

NSCIA Executive Director and CEO, K. Eric Larson with Marcie Roth, director, FEMA Office of Disability Integration and Coordination.

8 Vol. 8, No. 1

business FDA Approves Move-ment Disorder Drug GABLOFEN® (baclofen injection) for Treatment of Severe Spasticity

In the fall of 2010, the Food and Drug Ad-ministration (FDA) approved Gablofen® (baclofen injection) for use in the man-

agement of severe spasticity, giving health-care providers a new, easy-to-administer and cost-effective intrathecal baclofen treatment option. Severe spasticity is a movement dis-order affecting more than 500,000 patients in the U.S. alone and is often brought on by multiple sclerosis, cerebral palsy, spinal cord injury, brain trauma and stroke. Gablofen is manufactured by St. Paul, MN based CNS Therapeutics.

Richard Penn, M.D., a pioneer in intra-thecal drug therapies and CNS Therapeutics co-founder and chief scientific officer, im-planted the industry’s first programmable in-trathecal drug pump more than 25 years ago.

“Until now, the evolution of intrathecal therapies has been limited to modest inno-vations in implantable devices,” said Penn. “With Gablofen, CNS Therapeutics is driv-ing the industry ahead by developing new options to improve the management of de-bilitating neurological conditions.”

Gablofen is compatible with Medtron-ic‘s SynchroMed®II programmable drug pumps and is offered in the same standard concentrations as Lioresal® Intrathecal (ba-clofen injection), a drug manufactured by Novartis and marketed exclusively by Medtronic. Gablofen is easy to administer with ready-to-use vials and pre-filled sy-ringes offering clear advantages over glass ampules including a reduction in both refill preparation time and the risk of medicine contamination.

“When we founded CNS Therapeutics, our goal was to improve on existing intra-thecal therapies by addressing the concerns of patients and all caregivers involved in the treatment path,” said John Foster, CEO of CNS Therapeutics. “Gablofen marks our first FDA approval and is a significant first step in our company mission to innovate in the areas of spasticity, Parkinson’s disease and chronic, intractable pain.

CNS Therapeutics was founded to de-velop and launch new intrathecal therapies and has attracted funding from Thomas, McNerney & Partners and InterWest Part-ners. In addition to Gablofen, the com-pany is also developing treatments for the management of severe pain, and is collabo-rating with the University of Helsinki on novel intrathecal therapies for Parkinson’s disease. This research is in part funded by a grant from the Michael J. Fox Foundation.

There are approximately 150,000 pa-tients in the U.S. currently implanted with intrathecal drug pumps. “This market has significant growth potential and is ready for improved pharmaceuticals,” said Pratik Shah, Ph.D., partner, Thomas, McNerney & Partners. “We have seen innovations from leading manufacturers of intrathecal drug pumps however CNS Therapeutics is currently the only company solely dedi-

cated to innovation of pharmaceuticals ad-ministered in these pumps.”

“CNS Therapeutics is well-positioned in an industry that has traditionally been dominated by large device manufacturers,” said Nina Kjellson, general partner, Inter-West. “With a spirit of innovation com-bined with the ability to adapt and move quickly, we are optimistic about the poten-tial for Gablofen as well as several products to come.”

About Gablofen Gablofen is available in the same standard concentrations as Lioresal (50 mcg/mL, 500 mcg/mL and 2,000 mcg/mL) and offers:

• Nurses: a convenient, easy-to-adminis-ter therapy that features prefilled vials and syringes rather than glass ampules that must be broken to access the medi-cation. This will reduce refill prepara-tion time and the risk of medicine con-tamination

• Pharmacists: more streamlined drug preparation and processing, simplified ordering and greater shelf space

• Patients: a new cost-effective intrathe-cal baclofen which may result in lower copays and improved access to therapy

Baclofen, originally developed in the 1920s as a potential antiepileptic drug, was also found to be safe and effective for reduc-ing spasticity. In the early 1980s, baclofen was discovered to be more effective when delivered intrathecally, a method of deliv-ering the therapy directly and continuously into the central nervous system (CNS) via an implanted drug pump. The use of site-specific drug delivery holds tremendous promise for the treatment of many neuro-logical disorders and pain. Delivering ba-

clofen directly to the CNS avoids the blood brain barrier, results in increased efficacy at dramatically lower doses and significantly reduces the main side effects of systemic (oral) administration. Baclofen intrathe-cal injection was first approved in 1992 as an orphan drug and is now considered the standard of care for the treatment of severe spasticity of spinal and cerebral origin.

The number of baclofen treated patients with severe spasticity is expanding by ap-proximately 10,000 new patients per year, and the need for intrathecal baclofen thera-py is life long since it does not cure the cause of spasticity.

Severe spasticity is estimated to affect more than 500,000 patients in the U.S. alone and is often brought on by multiple sclerosis, cerebral palsy, spinal cord injury, brain trauma and stroke. It causes certain muscles to continuously contract, resulting in stiffness or tightness which may inter-fere with movement, speech and manner of walking.There is no cure for spasticity and physicians often manage the condition with baclofen, which is delivered orally or intrathecally. In the U.S., approximately 60,000 patients have been treated with in-trathecal baclofen. Due to the complexity of this delivery method, CNS Therapeutics developed Gablofen to specifically address the challenges of treating spasticity faced by patients, caregivers and healthcare pro-viders.

More information about CNS Therapeutics and important Gablofen safety information is at www.cnstherapeutics.com. For more information about spasticity and available treatment options, visit Spinal Cord Central at www.spinalcordcentral.org or call 800-962-9629.

research Health Promotion And Spinal Cord InjuryBy John Keegan

For years, health promotion for people with spinal cord injuries (SCI) focused largely on preventive health services.

In fact, these terms have commonly been used interchangeably across the health care field. However, some health professionals and researchers believe there is a difference between health promotion and preven-tive health services that needs to be high-lighted. Dr. Nola Pender, a recently retired professor of nursing and health promotion researcher, emphasized the difference be-tween preventive health services and health promotion over the last few decades.

According to Dr. Pender, preventive health services focus on doing or not doing something to stop health problems from occurring. It is viewed as a negative ap-proach because of the emphasis on avoid-

ance behavior. In contrast, she described health promotion services as focusing on adopting positive lifestyle behaviors that enhance a person’s overall health and qual-ity of life. This is viewed as positive because it is not limited to taking or not taking a specific action to avoid a health problem, but focuses on improving overall health and well-being. This approach also conveys more respect to the individual by assum-ing an awareness of basic self-care. People with SCI typically understand the medi-cal aspects of their disabilities following the initial phase of their rehabilitation and often develop more interest in life enhanc-ing services and opportunities. This health promotion approach also has a broader view of health that recognizes that there is a healthy way to live with a disability.

This health promotion approach has been slow to be integrated into health care services for people with SCI, likely due to the limited research focused on this area. The current health care climate emphasizes evidence-based treatments, which are sup-ported by research and considered to be the most effective. Unless there is enough research on health promotion for people with SCI, health services in this area cannot be evidence-based or widely accepted and available. Another factor is that much of the research on health promotion has been

focused on the general population and not specifically focused on people with SCI, so it is not surprising that there are not many health promotion oriented services.

The future of research in health promo-tion for people with SCI, however, does seem promising. One reason for this is the recognition of the importance and inclu-sion of this topic in the national health agenda of the U. S. Department of Health and Human Services. In their current agenda released in the earlier part of last decade, Healthy People 2010, “Disability and Health” was included as a topic area that showed recognition of health issues as barriers to participation in employment and everyday activities. The new agenda, Healthy People 2020, which will be released in the next couple years, will likely include a more well-developed section related to health and disability. One indication of the growing importance of this was the more recent release of two documents by the U. S. Department of Health and Hu-man Services. The first document was the Surgeon General’s Call To Action To Improve the Health and Wellness of Persons with Dis-abilities, released in 2005, which empha-sized the importance of regular exercise in order to reduce negative symptoms of both physical and psychological health prob-lems. Second, the Physical Activity Guide-

lines for Americans (PAG) was released in 2008 and is the first-ever publication of national guidelines for physical activity. This publication included a section on the physical activity guidelines for adults with disabilities. The increasing attention on this topic in the national health agenda will likely improve the quantity and quality of the research in this area.

Increasing the physical activity level for people with SCI is one area of health pro-motion where more research is needed. In the Department of Rehabilitation Psychol-ogy at the University of Wisconsin-Madi-son, a research project is currently under-way that is intended to better understand what motivates people with SCI to engage in physical activity. This study aims to test Dr. Pender’s Health Promotion Model to see if it works well for people with SCI. If you are interested in participating, please follow the “Surveys and Studies” link on the home page of the National Spinal Cord Injury Association website (www.spinalcord.org ) and look for the study on “Health Promotion and SCI”.

John Keegan is a Ph. D candidate at the Uni-versity of Wisconsin-Madison. He is under-taking research for his dissertation to better understand what helps motivate people with SCI to be physically active.

9Vol. 8, No. 1

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community outreach

Consumers Invited to Help Define Future Research Agenda

Individuals living with SCI and their fami-lies are invited to join researchers, clini-cians, funding agencies, and policymakers

in a conference which will assess the current state of SCI rehabilitation, and then create an international agenda for spinal cord injury (SCI) rehabilitation research through 2020 by identifying research priorities that facilitate improved programs, practices and policies for rehabilitation of individuals with SCI.

Informing a New Research Agenda: The State of the Science in Spinal Cord Injury Reha-bilitation June 5-7, 2011, at the Grand Hy-att Washington Hotel, Washington D.C. in conjunction with the June 4-8 ISCOS-ASIA 2011International Conference on Spinal Cord Medicine and Rehabilitation

This State of the Science (SOS) Confer-ence is the pre-course to the ISCOS-ASIA conference.

Informing a New Research Agenda will take place on Sunday, June 5, 2011, with small group discussion sessions scheduled on Monday afternoon, June 6, 2011. There will be a final report to the entire conference on Tuesday morning, June 7, 2011. While the primary programming for the SOS is on Sunday, registration includes Monday and Tuesday programming as described here.

The conference will open with a plena-ry session featuring a presentation by Gary Karp, author and speaker on what he terms Modern Disability. A wheelchair user follow-ing a spinal cord injury he incurred in 1973 at the age of 18, he has the ability to draw from his unique perspective as a 37 year wheeler during a time of remarkable change in the experience and milieu of disability. Gary has produced four books, including his definitive guide to mobility disability, Life On Wheels. He has written extensively as a disability journalist, and speaks to a wide array of au-diences, including universities, rehab centers, business, government, and conferences. He is known for his passion, clarity, and humor as well as his dazzling juggling skills! In 2007 Gary was inducted into the Spinal Cord In-jury Hall of Fame as a disability educator.

James Fawcett, Ph.D. will address at-tendees as featured speaker at lunch. Fawcett is Chairman of the Cambridge University Centre for Brain Repair, Chairman of the Scientific Committee of Spinal Research, and Director of Medical Studies at King’s College Cambridge. He trained in medicine at Oxford University and St. Thomas Hos-pital, and then practiced for four years, in autoimmune disease, before going into basic research. He began his research on the repair of the damaged brain and spinal cord while at the Salk Institute inCalifornia, and contin-ued when he came to Cambridge University. His main interest has been the inhibition of nerve fiber regeneration by scar tissue. He has also worked on brain grafting, brain devel-opment and stem cells. Dr. Fawcett recently gained the distinction of being the first win-

ner of the Ulrich Schellenberg Prize from the Institut Internde Recherche en Paraplegie for his work on regeneration of the spinal cord.

Registration, agenda and full list of speakers are at www.asia-isvcos2011.org/state_of_science.php.

TRACK SPEAKERS, MODERATORS AND PANELISTSEach of the speakers listed below have been asked to write a paper, available prior to the conference.

Technology TrackSpeaker: Martin Ferguson Pell, Ph.D. Dr. Ferguson Pell is Professor and Dean of the Faculty of Rehabilitation Medicine, Uni-versity of Alberta. After graduating with a PhD in biomedical engineering Dr Fergu-son-Pell was appointed lecturer at the Uni-versity of Strathclyde in Glasgow. In 1982 he relocated to New York and founded and directed the Centre for Rehabilitation Tech-nology at Helen Hayes Hospital. He was also Associate Professor in Clinical Bioengi-neering in Rehabilitation at Columbia Uni-versity and held an adjunct appointment in biomedical engineering at Rensselaer Poly-technic Institute. In 1995 Dr Ferguson-Pell was offered the founding appointment to the ASPIRE Professorial Chair in Neuromuscu-lar Restoration and Rehabilitation at Uni-versity College London. During this time he was also appointed Director of Research and Development at the Royal National Ortho-paedic Hospital, a Board level position. Dr. Ferguson-Pell’s background is in Biomedical Engineering and he is a registered Clinical Scientist. He has extensive experience work-ing in clinical-academic settings developing engineering solutions to overcome barriers experienced by people with physical disabili-ties. He employs traditional scientific meth-ods, engineering design as well as qualitative methods to provide a balanced approach to the development and translation of research that directly influences the independence of people with physical disabilities.

Speaker: Mark Humayun, M.D., Ph.D. Dr. Humayun is Professor of Ophthalmol-ogy at the University of Southern California, Los Angeles, California. He received his B.S. from Georgetown University in 1984, his M.D. from Duke University in 1989, and his Ph.D. from the University of North Car-olina, Chapel Hill in 1994. He completed his ophthalmology residency at Duke Eye Center and fellowships in both vitreoretinal and retinovascular surgery at Johns Hopkins Hospital. He stayed on as faculty at Johns Hopkins where he rose to the rank of associ-ate professor before moving to USC in 2001.

Dr. Humayun’s research projects focus on the treatment of the most debilitating and challenging eye diseases through advanced engineering. Leading a team of more than 30 faculty and 200 students from 15 differ-ent institutes, Dr. Humayun is focused on developing therapies for 1) retinal degenera-tions such as retinitis pigmentosa, 2) macular degenerations such as age-related macular degeneration, 3) retinovascular diseases such as vein occlusions, 4) diabetic retinopathy, as well as 5) glaucoma.

Dr. Humayun is a member of the National Academies of Sciences Institute of Medicine. He has been voted as one of the Best Doc-tors in America and has received numerous research awards. He is the director of the Na-

tional Science Foundation BioMimetic Mi-croElectronic Systems Engineering Research Center, as well as the director of the Depart-ment of Energy Artificial Retina Project.

Moderator: Michael Boninger, M.D., Ph.D. Dr. Boninger is Professor and Chair in the Department of Physical Medicine & Reha-bilitation in the University of Pittsburgh, School of Medicine and director of the UPMC Rehabilitation Institute. Dr. Bon-inger is a physician researcher for the De-partment of Veterans Affairs (VA) and is the Medical Director of the Human Engineering Research Laboratories, a VA Rehabilitation, Research and Development Center of Excel-lence. Dr. Boninger is a Professor in the De-partments of Bioengineering and Rehabilita-tion Science and Technology and Director of the University of Pittsburgh Model Center on Spinal Cord Injury, a National Institute for Disability and Rehabilitation Research Center of Excellence. Dr. Boninger has an extensive publication record of over 160 pub-lished papers spanning 15 years in the area of spinal cord injury and assistive technology. Dr. Boninger also has extensive experience and publications related to teaching research. Dr. Boninger holds 4 US patents, was in-ducted in the National Spinal Cord Injury Association Hall of Fame in 2006, and has won numerous awards. Dr. Boninger’s stu-dents have also won over 45 national awards.

Panelist: Jennifer French As a result of a snowboarding accident, Jen-nifer French became a quadriplegic from a C6-7 incomplete spinal cord injury in 1998. In 1999, she received the Implantable Stand and Transfer System; the first woman to re-ceive such a system. Residing in St. Peters-burg, Florida, Jen is a member of the US Sailing Team AlphaGraphics, and is actively campaigning to represent the USA at the 2012 Paralympic Games in London. She is the co-founder and Executive Director of a non-profit organization, Neurotech Network focusing to educate, raise awareness and ad-vocate to access neurotechnology for persons with neurological diseases and disorders. Most recently, Jennifer’s story was featured in the documentary film, “To Have Courage”, and in the book, “Shattered Nerves”. 4

Panelist: Ruth Marshall, MBBS, FAFRM(RACP) Rehabilitation Physician and Medical Di-rector, South Australian Spinal Cord Injury Service, Royal Adelaide Hospital and Hamp-stead Rehabilitation Centre, Adelaide, Aus-tralia. Dr Marshall graduated in Medicine

from Sydney University and, after under-taking training in Melbourne and Sydney, gained her Dip. Physical and Rehabilitation Medicine in 1982 and her Fellowship of the Australasian College of Rehabilitation Medi-cine in 1984. In 1993 she became a founding Fellow of the Australasian Faculty of Reha-bilitation Medicine of the Royal Australasian College of Physicians and is currently the Lead Rehab Fellow in CPD for the RACP and AFRM. In 1986, she was appointed Medical Director of the South Australian Spinal Cord Injury Service and in 1988 was

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{ }INFORMING A NEW RESEARCH

AGENDA: THE STATE OF THE SCIENCE IN SPINAL CORD INJURY

REHABILITATION

June 5-7, 2011, at the Grand Hyatt Washington Hotel, Washington D.C. in conjunction with the June 4-8 ISCOS-ASIA 2011International Conference on Spinal Cord Medicine and Rehabilitation

KEYNOTE SPEAKERS• Gary Karp, San Rafael, Calif.• James W Fawcett, Ph.D., M.R.C.P., Cambridge Centre

for Brain Repair, University of Cambridge, Cambridge, England, United Kingdom

A range of topics outlined below will be addressed in parallel tracks, lead by leaders in the field as noted below. Attendees will be asked to read the papers available on the conference website in advance in order to participate in developing a set of recommendations.

TRACK 1. NEUROLOGIC AND FUNCTIONAL RECOVERY• Mary Galea, Ph.D., Melbourne School of Health Sciences,

Melbourne, Australia;• Armin Curt, M.D., Balgrist University Hospital, Zurich,

Switzerland

TRACK 2. AGING AND SECONDARY COMPLICATIONS• Luigi Ferrucci, M.D., Ph.D., National Institute of Aging,

Bethesda, Md.• Michael J. DeVivo, Dr.P.H., University of Alabama,

Birmingham, Ala.

TRACK 3. TECHNOLOGY FOR MOBILITY AND FUNCTION• Martin Ferguson-Pell, Ph.D., University of Alberta,

Edmonton, Alberta, Canada;• Mark Humayun, M.D., Ph.D., University of Southern

California, Los Angeles, Calif.

TRACK 4. PSYCHOSOCIAL, VOCATIONAL AND QUALITY OF LIFE OUTCOMES• Lex Frieden, M.A., LL.D., University of Texas Health

Science Center at Houston and Baylor College of Medicine, Houston, Texas;

For registration, agenda and full list of speakers, visitWWW.ASIA-ISCOS2011.ORG/STATE_OF_SCIENCE.PHP

14 Vol. 8, No. 1

also appointed Medical Director of the Or-thopaedic, Amputee and Spinal Injury Re-habilitation Service (which also incorporates Burns rehab). She continues to hold both these posts.

Her responsibilities include clinical work in acute, rehabilitation and long-term SCI management which sees her working in met-ropolitan teaching hospitals in Adelaide and in remote Aboriginal communities in North-ern Australia. She is involved in teaching medical students and rehabilitation medicine trainees, in research, predominantly clinical (including osteoporosis, early endocrine / metabolic changes post SCI, pain, psycho-social, exercise, psychosocial, indigenous health, outcome measurement and ethical issues) but with an interest in translational research as well and departmental manage-ment. She is a board member of the Austra-lian arm of Motivation.org, an organization dedicated to providing appropriate seating and wheelchairs and thus freedom and em-powerment to people with mobility impair-ments living in less resourced settings. She is a Fellow of ISCoS, a member of several ISCoS committees and is the incoming IS-CoS Vice-President for Oceania. She chairs the committee developing the taxonomy for non-traumatic SCI for the International Da-taset. She is a corresponding member of both ASIA and AAPMR.

First and foremost a SCI clinician, Dr Marshall is constantly looking for practical ways of enabling her patients to participate fully in all aspects of their lives.

Panelist: Hunter Peckham, Ph.D. Dr. P. Hunter Peckham is the Donnell In-stitute Professor of Biomedical Engineering at Case Western Reserve University. The major area of Dr. Peckham’s research is in rehabilitation engineering and neuroprosthe-ses. Dr. Peckham’s research effort focuses on functional restoration of the paralyzed up-per extremity in individuals with spinal cord injury. He and collaborators have developed implantable neural prostheses which utilize electrical stimulation to control neuromus-cular activation. They have implemented procedures to provide control of grasp-release in individuals with tetraplegia. This function enables individuals with central nervous sys-tem disability to regain the ability to perform essential activities of daily living. His present efforts concern the integration of technologi-cal rehabilitation and surgical approaches to restore functional capabilities.

Panelist: Mary Rodgers, Ph.D., PT Mary M. Rodgers, PhD, PT, is George R. Hepburn Dynasplint Professor and Chair, Department of Physical Therapy and Re-habilitation Science (PTRS), University of Maryland School of Medicine. She is also Scientific Advisor to the National Institute for Biomedical Imaging and Bioengineering (NIBIB) at the National Institutes of Health (NIH). Dr. Rodgers earned her degree in Physical Therapy at the University of North Carolina, Chapel Hill, and her PhD in Bio-mechanics from the Pennsylvania State Uni-versity. She came to the University of Mary-land, Baltimore, in 1994, and became PTRS department chair in 1998. Dr. Rodgers served as President of the International Soci-ety of Biomechanics (2003-5), was awarded an endowed professorship in 2005 and was inducted as a Fellow in the American Physi-cal Therapy Association (APTA) in 2009.

Over the past two decades, Dr. Rodgers per-formed clinical investigation with individuals who use manual wheelchairs, primarily sup-ported by grants from the Veterans Adminis-tration. As Director of the Pilot Exploratory Studies Core and co-PI of the Research Ca-reer Development Core, Dr. Rodgers is heav-ily involved in the mentorship, educational and dissemination efforts of the University of Maryland Claude D. Pepper Older Ameri-cans Independence Center. In her NIBIB/NIH advisory role, Dr. Rodgers facilitates support of technology development for in-dividuals with disability, rehabilitation, and healthy independent living.

Panelist: Nekram Upadhyay Nekram Upadhyay is the chair of Depart-ment of Assistive Technology at Indian Spi-nal Injuries Centre, New Delhi, India. He is also a visiting lecturer at ISIC Institute of Rehabilitation Sciences under Indra Prastha University, Delhi. Mr. Upadhyay finished his higher studies at University of Illinois at Chicago, USA and joined Indian Spinal In-juries Centre in 2006 where he established the Assistive Technology Unit within the rehabilitation services in collaboration with Department of Rehabilitation Sciences and Technology at University of Pittsburgh, PA (USA), under supervision of Dr. Rory A. Cooper. His primary work is focused on finding and developing the best solutions of wheelchair and related technology to im-prove functional capability of persons with Spinal Cord Injuries and similar kinds. He is one of the key members in the ADIP-Assis-tive Devices Distribution Scheme Commit-tee under the Ministry of Social Justice and Empowerment, Government of India. He is also an active member of various scientific organizations including ISCoS, SDS and has been recognized for his excellence in the field of disability and technology. He has been se-lected for numerous awards, including Rota-ry Innovative Technology Professional Award (2008), Ford Foundation International Fel-lowship Award (2003) for studying reha-bilitation technology at UIC, Chicago; State Level Award (2002) for the best innovator, Gold Medal, Abilympics (2001 and 2002) for designing user friendly systems.

Aging and Secondary Complications Track Speaker: Luigi Ferrucci, M.D., Ph.D. Dr. Luigi Ferrucci, Senior Investigator and Chief of the Longitudinal Studies Section of the National Institute on Aging at the Na-tional Institutes of Health, is a geriatrician and an epidemiologist who conducts research on the causal pathways leading to progres-sive physical and cognitive decline in older persons. In September 2002, he became the Chief of the Longitudinal Studies Section at NIA and the Director of the Baltimore Lon-gitudinal Study of Aging (BLSA). Dr. Fer-rucci received a Medical Degree and Board Certification in 1980, a Board Certification in Geriatrics in 1982 and Ph.D. in Biology and Pathophysiology of Aging in 1998 at the University of Florence, Italy. He spent a 2-year internship at the Intensive Care Unit of the Florence Institute of Gerontology and Geriatrics, and was for many years Associ-ate Professor of Biology, Human Physiology and Statistics at the University of Florence. Between 1985 and 2002 he was Chief of Ge-riatric Rehabilitation at the Department of Geriatric Medicine and Director of the Labo-ratory of Clinical Epidemiology at the Italian

National Institute of Aging. During the same period, he collaborated with the NIA Labora-tory of Epidemiology, Demography, and Bi-ometry where he spent several periods as Vis-iting Scientist. Dr. Ferrucci has made major contributions in the design of many epide-miological studies conducted in the U.S. and in Europe, including the European Longitu-dinal Study on Aging, the “ICare Dicomano Study,” the AKEA study of Centenarians in Sardinia and the Women’s Health and Aging Study. He was also the Principal Investiga-tor of the InCHIANTI study, a longitudinal study conducted in the Chianti Geographical area (Tuscany, Italy) looking at risk factors for mobility disability in older persons. Dr Fer-rucci is currently the director of the BLSA and under his leadership the study has been re-designed to focus more on normal aging and the development of age-associated frailty.

Speaker: DeVivo, Michael J, DrPH Dr. DeVivo, Professor in the Department of Physical Medicine and Rehabilitation and Director Emeritus, National Spinal Cord Injury Statistical Center, is an epidemiolo-gist with extensive experience in biomedical research design, methodology, and analysis. Since 1983 he has served as Manager of Ana-lytic Services for the UAB-SCICS and as Co-Director or Director of the NSCISC from 1995 to 2005. Dr. DeVivo currently serves as Director Emeritus of the NSCISC. He served on the editorial board of Spinal Cord, the official journal of the International Medi-cal Society of Paraplegia from 1994-2007. Dr. DeVivo is a sought after national and international speaker on the epidemiology, lifetime costs, and life expectancy following spinal cord injury.

Panel Discussion Moderator: Margaret L. Campbell, Ph.D. Dr. Campbell is a Senior Scientist for Plan-ning and Policy Support with tNational Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Edu-cation and Rehabilitative Services, U.S. De-partment of Education, Washington, D.C. In this capacity, her primary responsibilities involve: providing scientific direction for strategic pand priority development in the ar-eas of aging with disability, technologfor suc-cessful aging, and health disparities; serving as a project officercoordinating NIDRR’s re-search capacity-building efforts for both the Advanced Rehabilitation Research Training (ARRT) program, which fundinstitutions of high education to conduct multidisciplinary post-dresearch in rehabilitation and disabil-ity, and the Switzer Research Fellowship Pro-gram, which awards Merit and Distinguish Fellowships toqualified individuals to pursue individual research and development activi-ties consistent with the Rehabilitation Act of 1973, as amended. Dr. Campbell also repre-sents NIDRR and the Department of Educa-tion to the Federal Interagency Workgroup (FIW) for National Health Objectives, which oversethe planning and implementation of the Healthy People 2020 initiative, housed in the Office of DPrevention and Health Promotion, U.S. Department of Health and Human Services. Prior joining NIDRR in 1999, Campbell served for eight years as the Research Director for the NIDRR-funded Rehabilitation Research and Training Center on Aging with Disability at Rancho Los Ami-gos National Rehabilitation Center, Downey, CA. Dr. Campbell’s advanced degrees are in

Human Development and Family Studies from Cornell University (1986) and Social Relations from Lehigh University (1978), with an undergraduate degree in Sociology from University of California at Davis.

Panelist: Gary An, MD Dr. Gary An resides in Chicago, IL, where he is an Associate Professor of Surgery and Co-Director of the Surgical Intensive Care Unit there at the University of Chicago. His spe-cialty is trauma/critical care. Dr. An received his MD at the University of Miami in Miami, FL, and completed his general surgical and surgical critical care training at Cook County Hospital/University of Illinois, Chicago. He was previously an attending burn surgeon/act-ing director in the Burn Intensive Care Unit at the Cook County Hospital in Chicago, and a trauma surgeon/critical care attending at Northwestern University, in Chicago, IL and at Lutheran General Hospital in Park Ridge, IL. He is currently external faculty for the McGowan Institute of Regenerative Medicine (MIRM) at the University of Pittsburgh and affiliated with the Center for Inflammation and Regeneration Modeling on the Edito-rial Board for Critical Care Medicine, Shock and the Journal of Computational and Math-ematical Methods in Medicine. He is the cur-rent President of the Swarm Development Group and a founding member of the Society for Complexity in Acute Illness (SCAI). His area of research involves translational com-putational modeling and complex systems analysis of inflammation and healing, and the advancement of agent-based modeling as a means of dynamic knowledge representation.

Panelist: Sonia AncoliIsrael, Ph.D. Sonia Ancoli-Israel, Ph.D. is a Professor in the Department of Psychiatry at the Univer-sity of California San Diego (UCSD) School of Medicine, Director of the Gillin Sleep and Chronomedicine Research Center, Director of Education at the Sleep Medicine Center at UCSD and Deputy Director of the UCSD Stein Institute for Research on Aging. Dr. Ancoli-Israel received her Bachelor’s Degree from the State University of New York, Stony Brook, a Master’s Degree in Psychology from California State University, Long Beach and a Ph.D. in Psychology from the University of California, San Francisco. Her expertise is in the field of sleep disorders and sleep research in aging. Her current interests include the longitudinal effect of sleep disorders on ag-ing, the effect of circadian rhythms on sleep, therapeutic interventions for sleep problems in dementia, and fatigue, particularly the relationship between sleep, fatigue and circa-dian rhythms in cancer and other chronic ill-nesses. She is Past-President of the Sleep Re-search Society, Past-President of the Society for Light Treatment and Biological Rhythms, and was on the founding Executive Board of the National Sleep Foundation. She was honored in 2007 with the National Sleep Foundation Life Time Achievement Award and the Sleep Research Society Mary A. Car-skadon Outstanding Educator Award. Dr. Ancoli-Israel has been a guest on television and radio programs including NPR’s Morn-ing Edition and Fresh Air with Terry Gross. Dr. She is published regularly in medical and psychiatric journals with over 300 publica-tions in the field.

Panelist: Mike Boninger, MD (see description above)

15Vol. 8, No. 1

Panelist: Mark Nash, PhD Dr. Mark Nash, an Associate Professor in the Department of Neurological Surgery, Miller School of Medicine, and Principal Investiga-tor and Director of the Applied Physiology Research Laboratory at The Miami Project, is leading the SCI field in research on obe-sity in persons with spinal cord injury. He has received funding from NIDRR and the Craig H. Neilsen Foundation (CHNF) to determine whether exercise and specific diet supplementation can improve fat metabo-lism and other obesity-related secondary con-ditions associated with chronic SCI.

Psychosocial TrackSpeaker: Lex Frieden, M.S., LL.D. Lex Frieden is Professor of Biomedical Infor-matics and of Physical Medicine and Reha-bilitation at The University of Texas Health Science Center at Houston (UTHealth) and he is Professor of Physical Medicine and Re-habilitation at Baylor College of Medicine. Mr. Frieden also directs the ILRU – Indepen-dent Living Research Utilization Program at TIRR Memorial Hermann in Houston. ILRU is a research, training and technical as-sistance program on independent living for people with disabilities and seniors.

Mr. Frieden has served as chairperson of the National Council on Disability, presi-dent of Rehabilitation International, and chairperson of the American Association of People with Disabilities. He is recognized as one of the founders of the “independent liv-ing” movement in the early 1970’s, and he was instrumental in conceiving and drafting the Americans with Disabilities Act (ADA) of 1990.

A graduate of Tulsa University, Mr. Frie-

den has been honored as a Distinguished Alumnus. He holds a master’s degree in social psychology from the University of Houston where he completed doctoral requirements in rehabilitation psychology, and he has been awarded an honorary doctorate in law (LL.D.) by the National University of Ire-land. He has received two Presidential Cita-tions for his work in the field of disability.

Panel Discussion Moderator: Allen Heinemann, Ph.D. Allen W. Heinemann, Ph.D. completed his doctoral degree in clinical psychology at the University of Kansas with a specialty focus in rehabilitation. He completed an internship at Baylor College of Medicine in Houston and was an assistant professor in the Department of Psychology at Illinois Institute of Technol-ogy. Since 1985, he has worked at the Reha-bilitation Institute of Chicago where he di-rects the Center for Rehabilitation Outcomes Research, a rehabilitation-focused health ser-vices research unit. He is also associate direc-tor of Research at RIC and professor in the Department of Physical Medicine and Reha-bilitation at the Feinberg School of Medicine, Northwestern University. He serves on the Coordinating Committee for Northwestern University’s Institute for Healthcare Studies. His research interests focus on health services research, psychosocial aspects of rehabilita-tion including substance abuse, and measure-ment issues in rehabilitation. He is the author of more than 110 articles in peer-reviewed publications and is the editor of Substance Abuse and Physical Disability published by Haworth Press. He is the recipient of funding by the National Institute on Disability and Rehabilitation Research (RRTC on Measur-

ing Rehabilitation Outcomes and Effective-ness, DRRP on Health Services Research, Switzer Fellowship, Field Initiated Projects, Innovation Award, several RRTC projects), the National Institute on Alcohol Abuse and Alcoholism, Centers for Disease Control, the Social Security Administration, the Substance Abuse and Mental Health Services Adminis-tration, the J.M. Foundation, the Paralyzed Veterans of America-Spinal Cord Research Foundation, and the American Occupational Therapy Foundation and Association. He is a fellow of the American Psychological As-sociation (Division 22) and a diplomate in Rehabilitation Psychology (ABPP). During 2005-6, he served as the immediate past pres-ident of the American Congress of Physical Medicine and Rehabilitation and the Reha-bilitation Psychology division of the Ameri-can Psychological Association. He serves as a study section member for NIH, as the Congress Editor for the Archives of Physical Medicine and Rehabilitation, on the editorial board of NeuroRehabilitation, International Journal of Rehabilitation and Health, Jour-nal of Applied Measurement, the Journal of Head Trauma Rehabilitation, and Rehabilita-tion Psychology. He is the recipient of the Di-vision 22 (Rehabilitation Psychology – of the American Psychological Association) Roger Barker Distinguished Career Award.

Panelist: David B. Gray, MA, Ph.D. FAPA Dr. Gray, Professor of Occupational Therapy and Neurology at Washington University School of Medicine in St. Louis, MO, is a community based rehabilitation scientist. He teaches a course on disability policy in the Occupational Therapy program at Wash-ington University School of Medicine in St. Louis, MO. He was active in developing the Participation and Environment components of the International Classification of Func-tioning, Disability and Health (ICF). He was the Deputy Director of the National Center for Medical Rehabilitation Research (NC-MRR) at the National Institutes of Health (NIH) from 1990 through 1995. From 1986 to 1987, he was the Director of NIDRR at the U.S. Department of Education in Wash-ington, DC. He had a cervical spinal cord injury in 1976.

His research involves understanding the various factors that influence commu-nity participation by people with disabilities. His work covers: 1) developing and testing subjective and objective measures of partici-pation in context by people with mobility impairments; 2) developing person specific interventions (exercise, personal assistance, assistive technologies, secondary health con-ditions, health awareness, and behavioral strategies) for the purpose of increasing com-munity participation by people with mobil-ity, visual, auditory and intellectual impair-ments; 3) assessing environmental receptivity for people with disabilities; 4) implementing community engagement initiatives to im-prove community receptivity for people with impairments (access to urban and rural health facilities, recreational sites, hospitality indus-try, educational facilities, employment sites) using the participation in context surveys as outcome measures; 5) studying characteris-tics of people with disabilities who work and the receptivity of their work environments; and 6) developing and testing devices that improve the lives of people with disabilities.

Panelist: Gregory Murphy, Ph.D. Dr Greg Murphy is Professor of Rehabilita-

tion Psychology within the School of Public Health, La Trobe University and one of Aus-tralia’s most active rehabilitation psychologists. His main research interests are in vocational rehabilitation, particularly return to work fol-lowing serious injury. He is particularly in-terested in two key constructs central to the successful adjustment to major life crises – ef-fective social support, and personal control beliefs of those facing major adjustments.

Dr. Murphy has held visiting staff mem-ber appointments at such prestigious aca-demic and hospital settings as Johns Hopkins University, Georgia Institute of Technology, the Duke of Cornwall Spinal Unit and the Swiss Paraplegic Centre. He is currently a member of the Australian federal govern-ment’s Department of Veterans’ Affairs Tech-nical Advisory Committee (Rehabilitation) where he contributes to policy and service development in the area of rehabilitation and return-to-work for both veterans as well as in-jured members of the Defense forces.

Panelist: Luc Noreau, PhD Dr Luc Noreau is a full professor at the Reha-bilitation Department, Laval University, and Scientific Director at the Center for Interdis-ciplinary Research in Rehabilitation in Social Integration (CIRRIS), Quebec City. He was initially trained in the field of Exercise Sci-ences (Laval University) and he carried out a doctoral training in Community Health at the University of Toronto (1991). From 1994 to 2006, Dr. Noreau was a scholar of the Que-bec Health Research Foundations; he has car-ried out projects in various fields but primarily in spinal cord injury rehabilitation outcomes. His interests also cover also the domain of conceptualization of the disablement process, social participation and quality of life. From more than 15 years, he is closely associated as principal investigator of several projects car-ried out within the Quebec SCI Centers of Excellence (Montreal and Quebec City) and more recently associated with the Ontario-Quebec partnership initiative (ONF/REPAR) supporting SCI research. He initiated the development and validation of a community follow-up process for the Rick Hansen Spinal Cord Injury Registry that included important component on secondary complications, par-ticipation and quality of Life. He also acted as the Lead of the Community Integration Practice Network of the SCI-Translational Re-search Network (SCI-TRN, now Rick Han-sen Institute) in Canada (2008-2009)

He is the co-developer of an instrument called the Assessment of Life Habits (LIFE-H) to measure social participation.

Panelist: Marcel W.M. Post, Ph.D. Dr. Post is a Senior Researcher at the Reha-bilitation Center De Hoogstraat, Utrecht, The Netherlands, and Associated Professor at the Rudolf Magnus Institute for Neuro-science of the University Medical Centre Utrecht, The Netherlands. Following com-pletion of his doctoral work at Utrecht that focused on health status and life satisfaction after spinal cord injury, Dr Post’s current re-search interests include study of quality of life, psychological factors, and caregiver bur-den in persons after spinal cord injury, stroke, and neuromuscular diseases. In his research he has focused on, participation, rehabilita-tion outcome measurement, and instrument development in these areas. Dr. Post is the author of more than 140 articles in peer-reviewed journals. He is member of the Ex-ecutive Committee of the ISCoS/ASIA Data

16 Vol. 8, No. 1

Sets project and co-chaired the development of the datasets for activities and participation, and quality of life. Dr. Post was visiting pro-fessor at the Swiss Paraplegic Research and received the Van Hoytema award from the Dutch Association for Physical Medicine and Rehabilitation (VRA) for his contribution to rehabilitation medicine in 2010.

Neurological and Functional Recovery Track Speaker: Mary Galea, Ph.D., PT Professor Mary Galea is Foundation Profes-sor of Clinical Physiotherapy and Director of the Rehabilitation Sciences Research Centre at the University of Melbourne and Austin Health, Melbourne, Australia. She is a physio-therapist and neuroscientist who commenced her academic career after a substantial period in clinical practice. Her research program includes both laboratory-based and clinical projects with the overall theme of elucidat-ing how voluntary movement is controlled by the brain and factors that promote recovery following nervous system damage. She has conducted research into the organization and development of the corticospinal tract and the recovery of manual dexterity after spinal cord injury in the primate. In 2007 Professor Galea was awarded a Churchill Fellowship to investi-gate rehabilitation after spinal cord injury and was recently honored with the Distinguished Scientist Award at Austin Health. She is cur-rently the lead investigator on a large multi-site program of research, SCIPA (Spinal cord injury and physical activity), investigating the effects of exercise after spinal cord injury.

Speaker: Armin Curt, M.D. Professor Armin Curt, MD is Chair in Spinal Cord Rehabilitation and Medical Director of the Spinal Cord Injury Center, University of Zurich, Switzerland. He is the founder and current chair of the European Multicenter study group in Spinal Cord Injury (EMSCI).

Recovery in human SCI (corresponding to animal studies) is attributable to multiple mechanisms within the spinal cord (repair and sprouting as well as plasticity of neural circuits within the spinal cord), supra spi-nal levels (reorganization of brain function) and within the peripheral nervous system (sprouting of motor units) including muscle properties (electromechanical coupling). The outcome in acute SCI is well predictable by combined clinical (neurological deficit) and neurophysiological recordings (MEP, SSEP, NCS, EMG etc..) and allow for investigat-ing mechanisms of recovery. Beyond neural changes clinical recovery can be also attrib-uted to either effects based on the adjustment of movement strategies (achieving ADLs by alternative approaches and technical aids) or compensation of body function (opti-mized training of preserved motor/sensory function) that is fundamental to functional recovery both in patients with complete and incomplete SCI.

Panel Moderator: John Steeves, Ph.D. John Douglas Steeves was born in Calgary, Alberta in 1952. He completed his doctor-ate (Neuroscience/Physiology) from the University of Manitoba, School of Medicine in 1978 and then completed a fellowship at the University of Alberta. Dr. Steeves was first appointed as an Assistant Professor at the University of British Columbia (UBC) in Vancouver in 1979 and has been a full profes-sor since 1992 in the Departments of Cellu-lar and Physiological Sciences, Rehabilitation Sciences, Surgery (Neurosurgery) and Zool-

ogy at UBC and Vancouver Coastal Health Research institute (part of Vancouver Coastal Health).

Currently a full professor at University of British Columbia (UBC) and Vancouver Hospital, Dr. Steeves is founder of ICORD (International Collaboration On Repair Discoveries) as the first multidisciplinary re-search group at UBC, directs the Rick Han-sen Spinal Cord Injury Network’s (SCI-Net) and is Chair of the Clinical Trials Committee of the International Campaign for Cures for Spinal Cord Injury Paralysis (ICCP). He has been the President or Board Director of sev-eral biotechnology companies dedicated to the treatment of neurological disorders.

Panelist: Kim Anderson-Erisman, Ph.D. Dr. Anderson-Erisman was an Assistant Pro-fessor in the Department of Neurological Surgery at the University of California, Irvine and a core faculty member of the Reeve-Irvine Research Center. Her previous research has focused on translational investigations and bridging the gap between basic science, clini-cal science, and the public community living with spinal cord injury (SCI). Her training spans the spectrum of SCI research, from cel-lular and molecular studies as a graduate stu-dent, to whole animal and behavioral studies as a post-doctoral fellow, to human clinical research as a faculty member. This breadth of knowledge will be a great attribute in her new role as the scientific interface to the public for the diverse array of cutting-edge research be-ing conducted at The Miami Project.

A special perspective that Dr. Anderson-Erisman brings to the SCI research field is that she also has a spinal cord injury. When she was seventeen years old she was involved in a motor vehicle accident that left her with quadriplegic paralysis from a cervical spi-nal cord injury. After graduating from high school without delay, she went on to col-lege at Texas A&M University and graduate school at the University of New Mexico. She has received numerous awards, including the Khatali Award for Outstanding Senior Graduate Student, a NIH National Research Service Award as a post-doctoral fellow, and the Paul H. Silverman Award for Outstand-ing Work on Science and Ethics in 2005. She was awarded the Stephen Aroff Memorial Award in 2004 and the Jerry Stein Indepen-dent Living Award in 2006 for being a role model in the SCI community, and she was inducted into the SCI Hall of Fame in 2007.

Panelist: Eric P Hoffman, PhD Dr. Hoffman, the Director of the Research Center for Genetic Medicine and the Well-stone Muscular Dystrophy Center, at the Children’s National Medical Center in Wash-ington DC, earned his PhD in Genetics at Johns Hopkins University, and then pursued post-doctoral training with Louis Kunkel at Boston Children’s Hospital. In 1990, he es-tablished an independent laboratory at the University of Pittsburgh where he worked on various neurological conditions. In 1999, he moved to Washington DC to establish the Research Center for Genetic Medicine Re-search at Children’s National Medical Cen-ter. Dr. Hoffman holds the James A. Clark Chair for Genetic Medicine and is Professor of Pediatrics, Biochemistry and Molecular Biology at George Washington University. He is experienced in most aspects of human molecular genetics, with NIH funding in SNP association studies, microarrays in hu-man disease, and management of large public

access databases. Dr. Hoffman is board-certified by the

American Board of Medical Genetics in Clinical Molecular Genetics. He has secured numerous NIH intramural contracts for ser-vices provided, including training of Medi-cal Genetics fellows enrolled in the NIH/NHGRI training program, automated se-quence analysis of multiple endocrine neo-plasia (MEN1) patients from NIH/NIDDK, profiling of neural stem cells, and microarray laboratory design and integrated databases (NCI). He has a strong commitment and track record as a molecular biologist and a teacher that will be important functions of the proposed Wellstone Center.

Dr. Hoffman has extensive experience in administering large and complex research teams. These include directing numerous Ge-netics Core functions (NICHD MRDDRC, NCRR CRC, NICHD CHCDA, NHLBI PGA), and multi-site RO1 projects (8 institu-tion SNP association study in muscle QTLs; see Project 1). He is well-versed in transla-tional and clinical research, and his laboratory is a heavy user of the NCRR CRC housed at CNMC. His funding from NICHD/NC-MRR is focused on providing an integrated molecular and public access core in support of rehabilitation research within the NCMRR network. The Core is a pre-existing collabora-tive group of experts in genomewide DNA, mRNA, and protein analyses at the Research Center for Genetic Medicine.

Panelist: Andrei Krassioukov, M.D., Ph.D. Dr. Andrei Krassioukov is a clinician scien-tist who obtained his medical degree from Volgograd State Medical School, Russia and his PhD degree at the Ivan Pavlov Institute of Physiology, Russian Academy of Science, St. Petersburg, Russia. In 1991, through the Canada-USSR research exchange program, he started his research career in North Ameri-ca and has a Research Degree PhD. Presently, he is an Associate Professor, Department of Medicine, Div. of Physical Medicine & Re-habilitation and a Principal Investigator at the International Collaboration On Repair Discoveries (ICORD) at the University of British Columbia, Vancouver, BC. He is also a staff physician at the Spinal Cord Program at the GF Strong Rehabilitation Center in Vancouver, BC. His research involves utiliza-tion of experimental animal models, clinical investigations in human, and is focused on investigation of the mechanisms of autonom-

ic dysfunctions after spinal cord injury. He has authored and 16 co-authored more than 100 peer-reviewed manuscripts, book chap-ters and reviewed articles. For the last four years as the Chair of Autonomic Standards Committee for the American Spinal Injury Association and International Spinal Cord Society (ASIA/ISCoS), he is leading the in-ternational initiative on development of au-tonomic assessment which is to be added to the presently established neurological evalu-ation of individuals with spinal cord injury.

Panelist: Keith Tansey, M.D., Ph.D. Dr. Keith Tansey joined Shepherd Center as Director of Spinal Cord Injury Research in 2008 and simultaneously was appointed to the Departments of Neurology and Physiol-ogy at Emory University School of Medicine and to the Spinal Cord Injury Clinic at the Atlanta VA Medical Center.

Dr. Tansey completed his B.S. and M.S. in Biology and Biomechanics at Stanford University and then completed his M.D. and Ph.D. in Neuroscience at the Univer-sity of Texas Southwestern Medical Center, where his dissertation research focused on spinal cord physiology. He completed his residency training in neurology at Washing-ton University in St. Louis and then fellow-ships in spinal cord injury research and neu-rorehabilitation at Washington University and at the University of California Los An-geles. Dr. Tansey is board certified in Neu-rology and Spinal Cord Injury Medicine. He has won several teaching and research awards including one from the American Spinal Injury Association (ASIA). Dr. Tan-sey also served as a Research Consortium Associate for the Christopher Reeve Paraly-sis Foundation.

Dr. Tansey is interested in neural plastici-ty and repair that leads to functional recovery after spinal cord injury and how those pro-cesses could be improved. He is specifically interested in neural circuits for motor func-tions like locomotion, but also neural circuits related to pain and autonomic nervous sys-tem function. He is working to combine in-terventions like activity based therapies with pharmacology, electrical stimulation, and even cellular transplantation to improve neu-ral recovery after injury. Dr. Tansey has com-bined animal model and human research to gain better insight into these questions and to more rapidly translate basic science research ideas into clinical studies.

17Vol. 8, No. 16 September/October 2007

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

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

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

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

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

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

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

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

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

Attorney Ronald R. Gilbert

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

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

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

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

• Helped sponsor legislation benefitting spinal cord injuredpersons.

• Served as Secretary and member of the Board of Directorsof the National Spinal Cord Injury Foundation.

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

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

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

1-800-342-0330Ronald R. Gilbert, P.C.

www.fscip.org / ron@fscip.orgwww.aquaticisf.org

rrgpc@aol.comIf you have suffered a spinal cord injury, call today to receive afree legal consultation and complimentary copy of SpinalNetwork and a handbook on legal options for victims of spinalcord injuries.

Cases HandledPersonally Nationwide

OPTIONSFOR VICTIMS OF

SPINAL CORD INJURIES• Financing The Future: Managing

Disability-Related Expenses• Liability, Compensation And Your Rights• Legal Options• Improving Safety Through Legal Action• Finding And Choosing An Attorney• Getting Help: A Guide To Organizations• For Details, Go To Ron’s Website —

www.fscip.org For Legal Options AndProfessional Help.

Who’s Who in American Law1985 through present

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

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

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

° Helped sponsor legislation benefiting spinal cord injured persons.

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

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

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

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

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

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

If you have suffered a spinal cord injury, call today to receive a free legal consultationand complementary membership in the National Spinal Cord Injury Association, includ-ing the publication Options, a complementary copy of Spinal Network and a hand-book on legal options for survivors of spinal cord injuries.

Cases Handled Personally Nationwide

1-800-342-0330Ronald R. Gilbert, PC

www.fscip.org / ron@fscip.org

OPTIONS FOR SURVIVORS OPTIONS FOR SURVIVORS OF SPINAL CORD INJURIESOF SPINAL CORD INJURIES

° Financing The Future: Managing Disability Re-lated Expenses

° Prevention: Helping Others Avoid Accidents ° Liability, Compensation And Your Rights ° Legal Options ° Improving Safety Through Legal Action ° Finding and Choosing An Attorney ° Getting Help: A Guide To Organizations

Name

Street

City, State, Zip Phone

E-mail (very important, if available)

NSCIA Member ServicesSCILife, HDI Publishers, PO Box 131401,

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

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

e-mail: membership@spinalcord.org web site: www.spinalcord.org

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

Become a Member Today.It’s Free!

JOIN OUR GROWING NATIONAL FORCEFOR CHANGE

Please check membership type:

THE NATIONAL SPINAL CORD INJURY ASSOCIATION

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 of friend ■ Individual service or health care provider■ Organizational

FREE!FREE!FREE!Contact Us

✂cut out & return

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

bac

The Separate Benefit Category Steer-ing Committee has released an update to the “Proposal To Create A Separate

Benefit Category For Complex Rehab Technology”. The January 2011 proposal incorporates changes made since the issu-ance of the initial September 2010 propos-al and includes additional supporting ex-hibits. It provides the background, needed changes, and activities undertaken relating to obtaining a Separate Benefit Category under the Medicare program and will be distributed to members of Congress to sup-port the introduction of needed legislation.

The Separate Benefit Category Steering Committee consists of representatives from six national organizations: the National Coalition for Assistive and Rehab Technol-ogy (NCART), the American Association for Homecare (AAHomecare); the Nation-al Registry of Rehab Technology Suppliers (NRRTS), the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), the Clinician Task

Force (CTF), and the United Spinal Asso-ciation (United Spinal).

The Separate Benefit Category initia-tive has received the endorsement of the ITEM Coalition, a broad based consum-er-led coalition of over seventy distinct organizations (www.itemcoalition.org). Its membership includes a diverse set of disability organizations, aging organiza-tions, other consumer groups, and volun-tary health associations. ITEM’s focus is to build support for broad-based legisla-tive and regulatory changes to address the problems of inadequate access to assistive devices, technologies and related services for people with disabilities and chronic conditions of all ages.

The initiative is in response to the sig-nificant challenges that threaten access to Complex Rehab Technology products and the supporting services used by individu-als with significant disabilities and medi-cal conditions. These individuals deal with physical, functional and cognitive chal-

lenges every day and uti-lize CRT to maximize their function and mini-mize the extent and costs of their medical care. Threats to these products and services stem from coding, coverage, and payment problems. These challenges have increased over the past several years and, without meaningful change to these policies, will only become greater in the future.

Complex Rehab Tech-nology products and as-sociated services include medically necessary, indi-vidually configured devic-es that require evaluation, configuration, fitting, adjustment or program-ming. These products and services are designed to meet the specific and unique medical, physical, and functional needs of an individual with a pri-mary diagnosis resulting from a congenital disor-der, progressive or de-generative neuromuscular disease, or from certain types of injury or trauma. CRT includes individually configured manual wheelchair systems, power wheelchair systems, adap-tive seating systems, alternative positioning systems and other mobility devices.

The January 2011 “Proposal To Create A Separate Benefit Category For Complex Rehab Technology” can be found and down-loaded at the NCART website at www.ncart.us under the Current Issues section.

Updated Proposal to Create Separate Benefit Category for Complex Rehab Technology Contains New Information and Will Be Used to Support Needed Congressional Legislation

18 Vol. 8, No. 1

NSCIA CHAPTER & SUPPORT GROUP NETWORKARIZONASUPPORT GROUPSEast Valley Support Group (COMPASS)Phone: (602) 241-1006Contact: Pauline Staples E-mail: plstaples@msn.com

Flagstaff Support GroupPhone: (928) 527-8567Contact: Al White

Grupo de apoyo en EspañolGentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012Contact: Diane

Prescott Support GroupPhone: (623) 209-0311Contact: Gary Hershey

SCI Women Support GroupBanner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307Contact: Jill Greenlee, CTRS

CALIFORNIACHAPTERWYNGS, NSCIA7900 Nelson Rd., Panorama City, California, 91402Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano Website: www.wyngs.orgE-mail: wyngs4sci@msn.com

SUPPORT GROUPSSouthern California SCI Support GroupCasa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com

Leon S. Peter’s Rehabilitation CenterP.O. Box 1232, Fresno, California, 93715Phone: (559) 459-6000 Ext. 5783Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org

CONNECTICUTCHAPTERConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, Connecticut, 06492Phone: (203) 284-1045Contact: Jeff Dion Website: www.sciact.orgE-mail: nscia@sciact.org

DISTRICT OF COLUMBIACHAPTERSCI Network of Metropolitan Washington, NSCIAAttn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904Phone: (240) 429-6141Contact: Kimball GrayE-mail: kimballg@ecnv.org

FLORIDASUPPORT GROUPSPeer Support Contact313 Spider Lily Ln, Naples, Florida, 34119Phone: (239) 353-5894Contact: Mindy Idaspe E-mail: scidconsultant@hotmail.com

Sea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, Florida, 32901Phone: (321) 984-4600Contact: Ellen Lyons-OlskiE-mail: ellen.lyons-olski@healthsouth.com

Capital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, Florida, 32308Phone: (850) 656-4800Contact: JoAnna Rodgers-Green

Florida Rehab. and Sports Medicine5165 Adanson St., Orlando, Florida, 32804Phone: (407) 823-2967Contact: Robin Kohn Email: rkohn@mail.ucf.eduPhone : (407) 623-1070Contact: Carl Miller

HEALTHSOUTH - Support Group90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866Contact Vicki Yasova

Tampa General Hospital SCI Support Group2 Columbia Dr., Tampa, Florida, 33601Phone: (800) 995-8544

GEORGIASUPPORT GROUPSColumbus SCI Support GroupPhone: (703) 322-9039Contact: Ramona Cost E-mail: rvcost@mchsi.com

Central Central GA Rehab Hospital3351 Northside Dr., Macon, Georgia, 31210Phone: (800) 491-3550 Ext. 643Fax: (478) 477-6223Contact: Kathy Combs

ILLINOISCHAPTERSpinal Cord Injury Association of Illinois1032 South LaGrange Road, LaGrange, Illinois, 60525Phone: (708) 352-6223Fax: (708) 352-9065Contact: Mercedes RauenWebsite: www.sci-illinois.orgE-mail: SCIInjury@aol.com

INDIANASUPPORT GROUPSCalumet Region Support Group2109 Cleveland St., Gary, Indiana, 46406Phone: (219) 944-8037Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us

Northwest Indiana SCI Support Group1052 Joliet Rd, Valparaiso, Indiana, 46385Phone: (219) 531-0055Contact: Joe White E-mail: heyjoewhite@comcast.net

IOWACHAPTERSpinal Cord Injury Association of Iowa3936 NW Urbandale Dr, Urbandale, Iowa 50322Phone: (515) 554-9759Contact: Angie Plager Website: www.spinalcordiowa.orgEmail: SCIAofIowa@hotmail.com

KANSASCHAPTERGreater Kansas City SCIA5701 West 110th St,Overland Park, KS. 66211Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: gkcscia@gmail.com

KENTUCKYCHAPTERDerby City Area Chapter, NSCIA305 W. Broadway, Louisville, Kentuky, 40202Phone: (502) 588-8574Contact: David Allgood, PresidentWebsite: www.derbycityspinalcord.orgE-mail: david.allgood@amerihealthmercy.org

SUPPORT GROUPFriends with Spinal Cord Injuries3785 hwy 95, Benton, Kentucky, 42025Phone: (270) 205-5675Contact: Anndrea CoffmanE-mail: whelygurl@yahoo.com

LOUISIANALouisiana Disability Alliance, NSCIAP.O. Box 86632, Baton Rouge, Louisiana, 70817 Phone: (225) 436-4519Contact: Glenn Gaudet

MARYLANDSUPPORT GROUPKernan Hospital SCI Support Group2200 Kernan Dr., Baltimore, Maryland, 21207Phone: (410) 448-6307Contact: Jenny Johnson Website: www.kernan.org/kernan/

MASSACHUSETTSCHAPTERGreater Boston Chapter, NSCIANew England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801Phone: (781) 933-8666Fax: (781) 933-0043Contact: Kevin GibsonWebsite: www.sciboston.comE-mail: sciboston@aol.com

SUPPORT GROUPSBMC Support/Discussion Group7 West-Harrison Ave Campus,Boston, MassachusettsPhone: (781) 933-8666Website: www.sciboston.com/support.htm

Spaulding Support/Discussion Group125 Nashua Street, Boston, MassachusettsPhone: (617) 573-2081Website: sciboston.com/support.htm

Spaulding Support/Discussion Group 125 Nashua Street, Boston, MassachusettsPhone: (857) 222-5123Contact: Betsy Pillsbury Website: sciboston.com/support.htm

Whittier Westborough Support Group 150 Flanders Road, Westborough, MassachusettsPhone: (508) 871-2000 Ext. x2165Contact: Deb Website: sciboston.com/support.htm

MICHIGANCHAPTERMSCIA1938 Woodslee Drive, Troy, Michigan 48083Phone: (248) 288-2270Contact: Stacey MurphyE-mail: smurphy@americaremedical.com

MISSISSIPPISUPPORT GROUPMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, Mississippi, 39532Phone: (601) 969-4009Contact: Michelle Bahret Website: www.lifeofms.comEmail: mbahret@yahoo.com

MISSOURICHAPTERGreater Kansas City SCIA5701 West 110th St, Overland Park, KS. 66211Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: gkcscia@gmail.com

SUPPORT GROUPSouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807Phone: (417) 886-1188Contact: Marion Trimble Website: www.swcil.orgE-mail: mtrimble@swcil.org

NEW HAMPSHIRECHAPTERNew Hampshire Chapter, NSCIA21 Chenell Drive, Concord, NH 03301 Phone: (603) 225-3304Fax: (603) 228-9680Contact: Debbie KriderE-mail: debbie@gsil.orgWebsite: www.nhspinal.org

NEW YORKCHAPTERSGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY, 14602Phone: (585) 275-6097Contact: Karen GenettE-mail: rochesternscia@yahoo.comPhone: (585) 275-6347Contact: Amy ScaramuzzinoE-mail: ascaramu@frontiernet.net

New York City Chapter, NSCIAMt. Sinai Dept of Rehab MedicineAttn: James Cesario1 Gustave L. Levy Place, Box 1240New York, New York, 10029Phone: (212) 659-9369Fax: (212) 348-5901Contact: James Cesario or John Moynihan Website: www.nycspinal.orgE-mail: NYCspinal@NYCspinal.org

SUPPORT GROUPSSCI Network of Central New YorkARISE, 635 James Street, Syracuse, New York, 13203Phone: (315) 464-2337Fax: (315) 464-2305Contact: Tammy BartoszekE-mail: bartoszt@upstate.eduPhone: (315) 247-0927Contact: Maria FroioE-mail: scin4cny@yahoo.com

Long Island Spinal Cord InjuryPhone: (631) 221-9255Contact: Ron Quartararo Website: www.testaverdefund.orgE-mail: info@testaverdefund.org

NORTH CAROLINACHAPTERNCSCIA3701 Wake Forest Rd., Raleigh, North Carolina, 27609Phone: (919) 350-4172Contact: Deborah MyersE-mail: dmyers8@triad.rr.comContact: Karen Vasquez E-mail: kvasquez@wakemed.org

OHIOCHAPTERSNorthwest Ohio Chapter, NSCIA13745 Archbold Whitehouse RdSwanton, Ohio 43558Phone: (419) 875-4029Contact: Hank Burney, PresidentWebsite: www.nwonscia.orgE-mail: bjbiii77@windstream.netPhone: (419) 531-6401Contact: Becky GayE-mail: beckkevn1@aol.com

Northeast Ohio Chapter, NSCIAPO Box 934, Chesterland, Ohio, 44026Phone: (440) 442-5550Fax: (440) 442-5789Contact: Jeff Schiemann E-mail: jjscpajd@aol.com SUPPORT GROUPHillside Rehabilitation Hospital8747 Squires Lane, Warren, Ohio, 44484Phone: (330) 841-3856Contact: Rebecca LebronE-mail: rlebron@forumhealth.orgPhone: (330) 889-2158Contact: Rick AckermanE-mail: bird196@aol.com

PENNSYLVANIASUPPORT GROUPSRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, Pennsylvania, 16602Phone: (800) 873-4220

Greater Pittsburgh Rehabilitation Hospital2380 McGinley Rd., Monroeville, Pennsylvania, 15146Phone: (800) 695-4774Contact: Kristy NaumanE-mail: kristy.nauman@healthsouth.com

Delaware Valley SCIA2610 Belmont Ave., Philadelphia, Pennsylvania, 19131Phone: (215) 477-4946Contact: Bruce McElrath

Magee Rehabilitation SCI Resource& Support Group6 Franklin Plaza, Philadelphia, Pennsylvania, 19102Phone: (215) 587-3174Fax: (215) 568-3736Contact: Marie Protesto Website: www.mageepeers.org

Rehabilitation Hospital of York1850 Normandie Dr., York, Pennsylvania, 17404Phone: (800) 752-9675 Ext. 720Phone: (717) 767-6941Contact: Tammy Derk E-mail: tammy.derk@healthsouth.com

SOUTH CAROLINACHAPTERSCSCIA2935 Colonial Drive, Columbia, SC 29203Phone: (866) 445-5509 (toll free)Phone: (803) 252-2198Contact: Diane Epperly, Executive DirectorE-mail: scscia@att.netContact: Rafe Ellisor, ChairmanE-mail: rafe.ellisor@healthsouth.comWebsite: www.scspinalcord.org

SUPPORT GROUPSChester Area SCI Support GroupPurity Presbyterian Church on 135 Wylie Street, Chester, Chester, South Carolina,Phone: (803) 385-2270Contact: Bill McDonoughE-mail: billandlee@truevista.net

Conway Peer Support GroupNew Horizons Center, 1021 Third Avenue, Conway, SCPhone: (843) 488-1309 Contact: Ellen LeftwichE-mail: leftwich@sccoast.net

Florence, SC Area SCI Support GroupHealthSouth Rehabilitation Hospital of Flor-ence, 900 East Cheves Street, Florence, SCPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: ronnielmc@yahoo.com

Greenwood Peer Support GroupBurton Center, 2605 Highway 72/221 East, Greenwood, SCPhone: 864-942-7124Contact: Kristy LawsonEmail: klawson@burtoncenter.org

Midlands Peer Support Group2935 Colonial Drive, Columbia, SCContact: Diane EpperlyPhone: (803) 252-2198 or 866-445-5509E-mail: scscia@att.net

Orangeburg, SC Area SCI Support Group3000 St. Matthews Road, Orangeburg, SCPhone: (803) 829-2043Contact: Rebecca FelderE-mail: Rebecca.felder@yahoo.com

Spartanburg, SC Area SCI Support Group101 St. Matthews Lane, Spartanburg, SC, 29301Phone: (864) 595-1947Contact: Dot ColsonE-mail: DColson@Dennys.com

Trident Peer Support Group1812 Sam Rittenberg Blvd., Charleston, SCPhone: (843) 792-2605 Contact: Richard AustE-mail: aust@musc.com

TENNESSEECHAPTERTennessee Spinal Cord Injury Association (TSCIA)105 Ballentrae Drive,Hendersonville, TN 37075Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: cherlystowe@yahoo.com Website: www.standuptn.com

TEXASCHAPTERRio Grande ChapterHighlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936Phone: (915) 298-7241Fax: (915) 298-7298Contact: Sukie ArmendarizContact: Ron Prieto E-mail: riograndenscia@aol.com

VIRGINIACHAPTERSpinal Cord Injury Association of VirginiaP.O. Box 8326Richmond, VA. 23226Phone: (804)726-4990Fax: (888) 752-7857Contact: Steve FetrowEmail: steve.fetrow@sciava.orgWebsite: www.sciava.org

WASHINGTONSUPPORT GROUPSCI ForumUniversity of Washington Medical CenterCafeteria Conference Room B/C1959 NE Pacific St, Seattle, Washington 98195Phone: (206) 685-3999Contact: Cynthia SalzmanE-mail: Csalzman@u.washington.edu

WEST VIRGINIASUPPORT GROUPWest Virginia Mountaineer Support GroupP.O. Box 1004, Institute, West Virginia, 25112Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us

WISCONSINCHAPTERNSCIA Southeastern Wisconsin1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215Phone: (414) 384-4022Fax: (414) 384-7820Contact: NSCIA-SWC OfficeE-mail: office@spinalcordwi.orgContact: John Dziewa E-mail: president@spinalcordwi.orgWebsite: www.spinalcordwi.org

For a current listing of Chapters and Support Groups, visit www.spinalcord.org, or call 800.962.9629.

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

19Vol. 8, No. 1

Register online for priority access!www.abilitiesexpo.comwww.abilitiesexpo.com

HoustonAugust 26-28, 2011

Reliant Center

San JoseNovember 18-20, 2011

San Jose Convention Center

AtlantaFebruary 17-19, 2012

Georgia World Congress Center

FREEAdmissionFREEAdmission

We discovered wheelchair accessories to makeour lives easier!

“We were quite pleased with the turnout of vendors for people of alldisabilities. We especially like the new inventions brought in by guyswho know firsthand what is needed for those in a chair. It takes aperson with a disability to understand the meaning of ‘disability’." Trish N., Houston Abilities Expo

I saw my son walk hands-free for the first timewith the help of a special walker!

“He had the biggest smile from ear to ear. He lifted up his knee and assoon as I saw that first step, I just started crying because I’d neverseen that before. He kept saying, ‘I’m doing it, Mommy, I’m doing it. I’mwalking! I’m strong!’” Desiree T., Los Angeles Abilities Expo

Everything I need is all in one place!“Finally, a place where ALL the options can be presented, includingoptions that I haven't even dreamed of! Even though the Internet hasmade the supply and demand path shorter, it's still hard to find justwhat you are looking for online.” Reba D., New York Metro Abilities Expo

The highlights for my kids were the sportingevents and other activities!

“They couldn’t get enough of it and we even had to visit the freewheelchair maintenance booth to get things tightened up! We alsomade contact with an adaptive sports program. The expo made myjob as a parent of children with disabilities a lot easier.” Heather B., Houston Abilities Expo

I made lasting connections with people from across the country.

"I think my favorite part is networking with people, as that's how I cancontinue being a resource for others. The more I know, the more I canhelp others! Interacting with other professionals with differentcapabilities was inspiring to me as well!" Angie P., Chicago Abilities Expo

I learned so much from the free workshops."I was able to attend a workshop for travel and will share with the MSSelf Help Group I attend and help facilitate. The workshop was great. Itwas hard for me to take enough notes!" Gail W., Chicago Abilities Expo

I feel 20 years younger thanks to Abilities Expo.“WOW! I never thought my arthritis would let me pick up a spoonagain and I found a whole set of cutlery designed for people like me.There were all sorts of practical gadgets to make lives for seniors, likeme, easier.” Robert S., Atlanta Abilities Expo

Los AngelesApril 15-17, 2011Los Angeles Convention Center

New York MetroMay 20-22, 2011New Jersey Convention & Expo Cente

ChicagoJuly 8-10, 2011Schaumburg Convention Center

For People with Spinal Cord Injuries… Experience Abilities Expo…For People with Spinal Cord Injuries… Experience Abilities Expo…

SpinalCord:Layout 1 12/10/10 6:30 AM Page 1

You can be there for her.

Even if you can’t be there with her. CaringBridge helps connect people

during a significant health challenge. Patients and families can easily

create a free website to share the experience, save time and energy,

and receive support.

To create your own website that gives recognition to the

National Spinal Cord Association, visit www.CaringBridge.org/spinalcord

Activity Based Locomotor Exercise Program (ABLE)

Courage Center

A holistic, personalized intensive fitness and wellness program for people with spinal cord injuries and other neurological diagnoses

— TheraStride, FES bikes, Giger, WAVE

— Fully accessible fitness center

— Warm water therapy pool

— Research-based protocols

— Mind-body integration

— Nutritional education/counseling

— On-site physicians clinic

Courage Center’s ABLE is a community-based fitness and wellness facility of the Christopher & Dana Reeve Foundation’s NeuroRecovery Network with additional support for the Centers for Disease Control (CDC)

Minneapolis, Minnesota

736.520.0600www.CourageCenter.org/ABLE

19659 CC ABLE Spinal Cord Ad.indd 1 3/30/11 11:09:02 AM

20 Vol. 8, No. 1