1Vol. 7, No. 4

The U.S. Food and Drug Administration (FDA) has notified Geron Corpora-tion (Nasdaq: GERN) that the clinical

hold placed on Geron’s Investigational New Drug (IND) application has been lifted and the company’s Phase I clinical trial of GRNOPC1 in patients with acute spinal cord injury may proceed.

The July 30 FDA notification enables Geron to move forward with the world’s first clinical trial of a human embryonic stem cell (hESC)-based therapy in man. The Phase I multi-center trial is designed to es-tablish the safety of GRNOPC1 in patients with “complete” American Spinal Injury As-sociation (ASIA) Impairment Scale grade A subacute thoracic spinal cord injuries.

“We are pleased with the FDA’s deci-sion to allow our planned clinical trial of GRNOPC1 in spinal cord injury to pro-ceed,” said Thomas B. Okarma, Ph.D., M.D., Geron’s president and CEO. “Our goals for the application of GRNOPC1 in subacute spinal cord injury are unchanged - to achieve restoration of spinal cord func-tion by the injection of hESC-derived oli-godendrocyte progenitor cells directly into the lesion site of the patient’s injured spinal cord. Additionally, we are now formally ex-ploring the utility of GRNOPC1 in other degenerative CNS disorders including Al-zheimer’s, multiple sclerosis and Canavan disease.”

The clinical hold was placed follow-

ing results from a single preclinical animal study in which Geron observed a higher fre-quency of small cysts within the injury site in the spinal cord of animals injected with GRNOPC1 than had previously been noted

in numerous foregoing studies. In response to those results, Geron developed new mark-ers and assays as additional release speci-fications for GRNOPC1. The company

Continued on page 16

www.spinalcord.org Vol. 7, No. 4

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

Iowa Celebrates 20th Anniversary of ADABy Angie Plager, with additional content provided by www.adaiowa.webs.com

Iowa has a variety of ADA advocates, from those in the background, whom you will never meet, to Federal Senators that you

hear about all the time.This year Iowans, with and without dis-

abilities, have come together to honor a piece of legislation that was created 20 years ago. The Americans with Disabilities Act (ADA) has been referred to as the “Emancipation Proclamation for people with disabilities”; not only because of how it has changed our world physically, but the changes it prompt-ed in attitudinal barriers and perspectives of people in society. Signed into law July 26th 1990, the ADA affords protections to per-sons with disabilities as does the Iowa Civil Rights Act, which prohibits discrimination based on race, religion, national origin, sex, and other characteristics.

There have been a variety of events

across our great state, and some are still yet to come!

After two Bingo Night fundraisers, last April, the volunteer ADA Planning Com-mittee (consisting of professionals, volun-teers, advocates and Americorps VISTA project volunteers) set out on a mission…help Iowans celebrate the 20th Anniversary of Americans with Disabilities Act (ADA)!

ADA Nights at the Ballpark. The Cedar Rapids Kernels, Iowa Cubs, Omaha Roy-als, Quad Cities River Bandits, Sioux City Explorers, and Waterloo Bucks each hosted an ADA Night during the month of July in honor of the federal law that protects indi-viduals with physical and mental disabilities from discrimination. A pre-game recep-tion, at each game, included entertainment and socializing. At the Des Moines Cubs Stadium was a performance by the New Vi-sions Dance Troupe; disability organizations had tables at each gate to hand out infor-mation and ADA temporary tattoos; VSA Iowa provided face painting and spin-art; plus we had a celebration cake. All other Minor league ballparks, previously listed, held similar ADA celebrations. I personally attended the ball games in Sioux City and Des Moines, great fun was had by all!

Downtown Farmers Market Saturday, July 24, 2010, in Des Moines. Visitor deco-

rated free bags filled with information about services offered for people with disabilities and their families. Senator Tom Harkin as-sisted at this event.

ADA Anniversary Celebration Satur-day, July 24th, at State Capitol West Terrace in Des Moines. This free, family-friendly event was open to the public, hosted by the ADA Planning Committee. Attendees picked up information about disability or-

ganizations while being engaged in inter-active, educational activities for all ability levels. VSA Iowa artists provided art and entertainment. Our Governor, Chet Culver, was planning to attend this event; until he received a phone call requesting his presence at a fallen soldier’s funeral in Eastern Iowa. However, he sent a representative to take his

Continued on page 6

President Barack Obama signs Executive Order increasing federal employment of individuals with dis-abilities, during an event commemorating the 20th anniversary of the Americans with Disabilities Act on the South Lawn of the White House. July 26, 2010. (Official White House Photo by Chuck Kennedy)

Geron to Proceed with First Human Clinical Trial of Embryonic Stem Cell-Based Therapy

2 Vol. 7, No. 4

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3Vol. 7, No. 4

SCILIFE STAFFMANAGING EDITOR: K. Eric LarsonSTAFF WRITER: Santina MuhaDESIGN 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 FrazierINFORMATION SPECIALIST: Jason HurstCOMMUNICATIONS ASSOCIATE: Santina MuhaWEB 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 Pamela Ballard, MDMary BroonerJohn FioritiGretchen FoxVeronica GonnelloChristine 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

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SCILife © 2010

chapter news

Michigan Spinal Cord Injury Association (MSCIA) Delivers “Rolling with Promise”By Cristina Vendittelli and Stacy Murphy

NSCIA’s Michigan chapter, the Michi-gan Spinal Cord Injury Association (MSCIA), hosted its first membership

development and fundraising event, “Roll-ing with Promise”, at the San Marino Club in Troy on Thursday, July 15.

Though it was the nonprofit organiza-tion’s very first event since being established in late 2009, more than 100 people at-tended, including case managers, insurance adjusters, rehabilitation facilities, hospitals, and research centers throughout Michigan that are dedicated to supporting those with SCI&D. Oakland Press columnist Jerry Wolffe, who writes the “Voices of Disabil-ity” column, was the special guest speaker for the evening.

While guests were served a five-course dinner that included hot appetizers and des-sert, AmeriCare Medical President Gregory Jamian conducted a short, informative pre-sentation announcing the mission and goals of the MSCIA.

Previously Michigan was lacking a main resource devoted to providing a peer network and library of contacts and orga-nizations specialized in spinal cord injury and disease. The Michigan chapter of the NSCIA, or the MSCIA, was established to provide these vital resources statewide.

“On a national level, there is quite a lot of information readily available on SCI&D. However, on a local level, we did not have a resource center allocated to provide infor-mation that impacts Michigan and our resi-dents,” says Stacey Murphy, vice president of corporate development for AmeriCare Medical.

The MSCIA has received the full en-dorsement of the National Spinal Cord Injury Association (NSCIA), the nation’s oldest advocacy group for people with spi-nal cord injury and disease (SCI&D), to serve as their Michigan representative. The mission of the MSCIA is “to enhance and empower the lives of those with spinal cord injury and disease through advocacy, educa-tion and research.”

Murphy and Jamian are both actively involved with the chapter and co-hosted the event.

“Proceeds from this event go towards spinal cord injury research,” says Jamian. “I believe it is a very worthy cause.”

AmeriCare Medical, Inc., a comprehen-sive healthcare management company in Troy, MI offering a total spectrum of outpa-tient and home healthcare programs and ser-vices, sponsored “Rolling with Promise” and was the primary local force behind establish-

ing a Michigan chapter of the National Spi-nal Cord Injury Association (NSCIA).

Because many of the patients that AmeriCare works with have spinal cord in-juries or disease, the company understands the need to have specialists to help maintain the lifestyle of those living with SCI&D.

AmeriCare Medical and its employees have all worked together to set up a website, www.mispinalcord.org, devoted to provid-ing information, contacts, and resources to those with SCI&D in Michigan.

The event successfully increased the MSCIA membership base, providing even

more contacts and resources for the SCI&D community in Michigan. Also, thanks to the hard work of the AmeriCare Medical employees that organized and managed the event, money was raised to go towards spi-nal cord injury research and further support the cause of the MSCIA. Chapter leaders

hope to make this an annual event. For more information about the MSCIA

or AmeriCare Medical, please contact Cristi-na Vendittelli at 248-288-2270, Ext. 203, or cvendittelli@americaremedical.com. Or visit www.mispinalcord.org for more information, or to sign up to become a member.

Members wishing to receive SCILife by US mail must subscribe to help cover the cost of mailing.

Complimentary copies will be available through our NSCIA Chapters or Hospital Partners,

and full electronic copies of SCILife will still be available online at no charge.

The only way to GUARANTEEyou receive every issue of

SCILife is to subscribe!

Only $15.00 for all six annual issues! Visit www.spinalcord.org/scilife

Greg Jamian outlines MSCIA goals at the “Rolling with Promise”.

Erica Nader (left), Ira Colston (second from left) and Rita Nader (right) from SCI Recovery Center Walk the Line, with MSCIA Board Member Stacey Murphy (second from right).

4 Vol. 7, No. 4

from the executive director Why “How’s the Weather?” is Not Small TalkBy K. Eric Larson, Executive Director and CEO, NSCIA

One of the stories you’ll see later in this issue is about the National Oce-anic and Atmospheric Administration

(NOAA) recent r e a f f i rma t ion that it expects an active hurri-cane season this year. Why do we care, you ask?

Good ques-tion and a timely one as well, given that this is the five year anniver-

sary of Hurricane Katrina, which was NSCIA’s frankly unplanned initiation into the arena of disaster preparedness and response.

A few years ago, the NSCIA role in disaster preparedness and response would have been hard for me to define. In fact, our members began defining it by calling us as the storm approached New Orleans and other gulf communities. We did our best and we were able to help many of those who called. Others, we could not help.

I was NSCIA’s director of operations during Hurricane Katrina and helped man-age our resource center’s response during and after the storm. I also managed our efforts in assisting people with disabilities who survived Katrina. Through the imme-diate aftermath of Hurricane Katrina and other recent devastating storms, I learned firsthand that that not all Americans were served equally by the systems then in place.

After Katrina, National Spinal Cord In-jury Association (NSCIA) was a leader in serving the thousands of people with dis-abilities impacted by Hurricane Katrina and other recent natural disasters. Through The Brian Joseph McCloskey Katrina Sur-vivors with Disabilities Fund, NSCIA was able to provide direct services to hurricane survivors, especially Katrina survivors, with spinal cord injuries and other disabilities that have a significant impact on daily life and recovery from these devastating hurri-canes. The fund served dozens of hurricane survivors with disabilities in a wide range of areas.

Later, NSCIA was provided case man-agement for individuals impacted by Ka-

trina as part of the Katrina Aid Today (KAT) coalition, through a grant from the United Methodist Committee on Relief (UMCOR).

Throughout that time, our executive director Marcie Roth began to work with other organizations, and with federal agen-cies like FEMA, to change that system that wasn’t working for so many Americans. And we began to realize that it could change, and we needed to be part of that process.

Today, we work to be part of the solu-tion. We work to increase awareness of the need for individuals to be involved in their own preparedness. And we work to connect those individuals with resources and sup-port in order to be prepared.

We are actively engaged in working to ensure that the needs and perspectives of people with disabilities are considered in all phases of the process.

In March, 2010, current FEMA Admin-istrator Craig Fugate said “We don’t plan for easy in FEMA, we plan for real.”

That sure had a nice ring to it, but I wasn’t sure then what it would really mean.

It was clearly a strong step for the ad-ministration to include a new position in FEMA of director, office of disability inte-gration and coordination – and an equally positive step to fill that position with Marcie Roth, who is a national leader and passion-ate advocate for people with disabilities on these issues.

More recently, FEMA announced it

would hire 10 Regional Disability Integra-tion Specialists to support and facilitate FEMA’s commitment to inclusive emer-gency preparedness, response, recovery and mitigation.

I recently had the opportunity to work directly with the FEMA Region 5 office in assuring that the functional needs of all Americans are considered throughout the planning process as FEMA and related agencies and organizations plan for a poten-tial New Madrid fault event.

I’m pleased to say that most of the peo-ple I worked with recently at FEMA seem to understand that real communities include as many as 20 percent who “have disabilities and may have access and functional needs that will affect their ability to read or under-stand preparedness information, hear alerts and warnings, utilize accessible transporta-tion during an evacuation, maintain their independence in a shelter, find accessible housing if theirs has been destroyed, access services to enable them to return to work and deal with a myriad of other challenges.”

And, while we still have far to go, I am thrilled to report that I’ve seen real progress towards preparedness that looks at real situ-ations, in real communities and I’m pleased to say that at least among those folks in leadership roles to which I’ve been exposed truly seem committed to emergency plan-ning that is inclusive of the participation and requirements of people with access and functional needs.

ALABAMAUAB MODEL SPINAL CORD INJURY CARE SYSTEM-SPAIN REHABILITATION CENTERBirmingham, AL(205) 934-3283

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

REGIONAL SCI CARE SYSTEM OF SOUTHERN CALIFORNIARancho Los AmigosDowney CA(582) 401-7111

SANTA CLARA VALLEY MEDICAL CENTER (ADD)San Jose, CA.(408) 793-6434

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

LOUISIANA HEALTHSOUTH REHAB HOSPITAL OF BATON ROUGEBaton Rouge, LA(225) 927-0567

TULANE INPATIENT REHABILITATION CENTER Metairie, LA(504) 988-5800

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

KERNAN ORTHOPEDICS AND REHABILITATIONBaltimore, MD888-453-7626

MICHIGANUNIVERSITY 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

NEBRASKAMADONNA REHABILITATION HOSPITALLincoln, NE (402) 486-8296

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

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

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

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. 7, No. 4

from the president

The ADA at 20 – Are We There Yet?By Patrick Maher, President, NSCIA Board of Directors

A 20th anniversary is a big deal. Twenty years in a personal relationship. Twenty years with the same employer. Twenty

years of service to a great cause. All can be reason for celebration, reflection and, unfortunately, in the case of the Americans with Disabilities Act, at least some con-cern. I was recently at a reception hosted by Speaker of the House Nancy Pelosi to celebrate the 20th anniversary of the sign-ing of the ADA into law. I have the great comfort of being able to drive my personal vehicle to the airport and catch my flight for this important and historic moment. Unfortunately many others living with disability are held captive to the sparse transportation resources available to them in their region for the day-to-day or more strategic opportunities that life presents.

ADA in Your Community Midwest PollI received the 2010 Great Lakes Region ADA Report Card late last week in my in box. Robin Jones, the Great Lakes ADA Center executive director, is a colleague and friend, and I frequently review the links and stories that her staff forward asso-ciated with ADA, disability and our nation. The Report Card was of interest to me. It was succinct and clear. I had hoped to take some pride in our regional grades sur-rounding the ADA and its implementation

in the Midwest. Unfortunately it was very disap-pointing.

Of the elev-en core subject areas that were graded, ranging from oppor-tunities in the workplace to accessibility of

transportation to physical accessibility to website accessibility, not one was graded above a “C”. How disheartening! I would welcome writing a post from a “glass half full” perspective, and had even one of the eleven core subjects received at least a “B” I might have pulled it off. Sadly, it’s tough to brag about a combination of C’s and D’s.

The top five priorities for action as not-ed by the 3500 respondents to the “ADA in Your Community Poll” over the 6-state region were:• More employment opportunities for

people with disabilities • Accessible transportation • Educating businesses and government

officials about their rights and responsi-bilities under the ADA

• Providing accommodations for em-ployment

• Educating people with disabilities about their rights and responsibilities

These are some very important areas of concern. As the director of a business focused on strengthening employment among qualified candidates with disabili-ties into the technology sector, I was imme-diately concerned that three of the top five priorities were very directly related to im-proving the overall employment picture for people with disabilities, two of them being obvious in more opportunities and reason-able accommodation in the workplace. It’s the third, perhaps less obvious, that I’d like to focus on.

Get me to the Job on Time!Specifically, the perception – and, I am confident, reality – that accessible trans-portation is still a cause for concern 20 years following the passage of the ADA is very discouraging. No matter how much we may address opportunity and accom-modation in the workplace, if we continue to ignore the very real challenge that so many candidates have in just getting to the job, we are burying our heads in the pro-verbial sand. I am always concerned with logistics when I consider one of our candi-dates for a position, knowing that whether they can get to the job often trumps their ability to do the job well. The latter is irrel-evant if they don’t have access to accessible transportation at a reasonable cost. Unfor-tunately this is often a challenge for can-didates with disabilities. I’ve seen it when trying to place many of our candidates. Many don’t drive for any of a number of reasons; they don’t have the upper extrem-ity strength or movement to drive safely, they have upper or lower extremity spastic-ity or contractions that make it challenging to drive, they lack acute enough vision to drive, or their disability or condition oth-erwise prevents them from driving.

An all too Common Story of a Man and his Commute Several years ago I was working with one of our consultants on landing his first pro-fessional opportunity. It was to support a group of developers for a very large, mul-tinational client in the energy industry. He was very excited about the role. My consul-tant didn’t drive as his diagnosis of severe spastic cerebral palsy precluded his safe operation of a vehicle. The two of us, along with my recruiter at the time, researched the possibility of patching together ac-cessible bus or accessible van routes that would get him to the client site reliably and on time. It was amazing to me how complicated and challenging it became to

provide a reasonable approach for him to be able to get to work in a suburb that was fairly close to his home. Not to mention how ill-informed the staff of the regional transit authorities were regarding the avail-ability, timing and routes of lift-equipped buses or other accessible transport vehicles. Ultimately he settled on two buses with a lapse between getting off one and on the other, and it took nearly 90 minutes in good weather to travel a route that would have been a 20 minute car drive!

A Call to Action for Urban PlannersIn January of this year the Innovation in Accessible Transport for All conference was conducted in Washington, DC. It includ-ed global leaders in planning, transporta-tion, policy and governance, and banking. The results from this one-day conference – clearly a compressed agenda – were to feed a follow- up meeting in Germany this past spring. The January meeting’s agenda points included direct language like “prac-tical outcomes, rhetoric to reality, apply-ing innovative approaches to accessibility for all”. At least this was heartening to see. While this was a global initiative, there was representation from several high-ranking members of key U.S.-based agencies and academic partners engaged in this chal-lenge – the Access Board, Federal Transit Administration and State University of New York among them.

No, We’re not There Yet!Positioning our students and professionals with disabilities for success, encouraging their passion to learn, work and contribute to the greater good, and yes – even passing the ADA 20 years ago - will continue to be hollow victories if they must continue to fight just to get to the job. For my consul-tants, and so many tens of thousands of oth-er qualified candidates with disabilities like them, let’s quit treating them like the kids in the back of the station wagon imploring their parents, “Are we there yet”?

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INVACAREwww.invacare.com

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SILVER BUSINESS MEMBERS

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FREE WHEEL www.gofreewheel.com

THANK YOU NSCIA BUSINESS MEMBERSNSCIA Business Members have expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders and have provided financial support to NSCIA.

If 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

Spinalcord.org is looking for

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6 Vol. 7, No. 4

Redefining Possibilities: A Family Affair

By Annie Marosits

Darren Templeton is a twenty four year old young man preparing to enter his second year in the Rutgers University

two-year Master of Business Administra-tion (MBA) program. After completing one year in the program, Darren is do-ing well and is happy with his choice of Rutgers. “The professors are dedicated to their students and the class gets along re-ally well,” says Darren. He hopes the MBA program will help him transition into a successful career track at a great company upon commencement in the spring. Dar-ren graduated from Ramapo College in 2009 with a degree in Finance. He is cur-rently interning at International Specialty Products in a logistics position, where he believes the internship is enabling him to “learn a lot and use the knowledge I’ve gained in a real world situation.”

In his spare time, he enjoys being a member of the NY Warriors Rugby team. They are a dedicated group and managed to qualify for the national tournament in Alabama last year. Darren attributes much of the team’s success to a new sponsorship from Easter Seals, as well as the continued hard work of every team member. When he isn’t practicing with his rugby team, Dar-ren enjoys working out, skiing and cycling, and has even found time to go skydiving twice. It is obvious that Darren is capable of great work and great play, but what may not be apparent from the snapshot descrip-tion of Darren’s busy life is the fact that he is living with a spinal cord injury.

In summer 2004, after diving into shal-low water, Darren was airlifted to Atlantic City Medical Center where it was deter-mined that he had broken his neck at C5. Within 24 hours, Darren was transferred

to Thomas Jefferson University Hospital in Philadelphia where he underwent surgery the next day. After 10 days in Philadelphia he was then transferred to Shepherd Cen-ter in Atlanta, where he began the grueling task of rehabilitation. After completing al-most three months as an in-patient and an additional three weeks as an out-patient in their Day Program, Darren returned home to Kinnelon, NJ.

After returning home, Darren sought out ways to continue his active lifestyle. He hired a personal trainer to help increase his strength and abilities. Shortly thereaf-ter, he learned of a facility located in Carls-bad, CA called Project Walk. Project Walk allowed Darren to work his entire body out again, something that was, and still is a pri-ority in his life. The many trips to Project Walk eventually led to the foundation of Push to Walk, an affiliated organization.

Located in Riverdale, NJ, Push to Walk is a non-profit 501(c)3 organization that is helping redefine possibilities for the spi-nal cord injured community. Founded in 2007 by Cynthia and John Templeton, Darren’s parents, Push to Walk is the only non-profit exercise gym in the New York-New Jersey area that empowers people with spinal cord injuries to realize their individ-ual potential. The organization’s rigorous one-on-one workout approach challenges clients to reach their personal goals and achieve maximum independence, leading to greater success and fulfillment in their personal and professional lives. Darren believes that “by bringing Push to Walk to NJ, people in this area with SCI have im-proved their quality of life in so many dif-ferent ways. Push to Walk will continue to play an important role in our clients’ lives through maintaining and improving health and progress made.”

The story of Darren and his family is an inspiring one. When asked who has been most influential since his injury, Dar-ren remarked, “My family has given me the opportunity to pursue whatever I want in-cluding recovery, independence, education and enjoying life in general. Their support

has given me the ability to succeed.” He also greatly credits his mother, Cynthia. “She has spent the last three years running and fundraising for Push to Walk which has given so many people, including myself, the opportunity to pursue recovery and live an active lifestyle.”

Darren seeks inspiration and support from outside sources as well. Being an ath-lete, it’s not surprising that Darren looks up to Dennis Byrd, a former NFL football player who overcame SCI with incredible determination and hard work. Other ath-letes such as Lance Armstrong give Dar-ren hope. Darren remembers, “I watched Lance win his 4th consecutive Tour de France from my hospital bed just days after my injury.”

When asked about his future goals,

Darren says his short term goals would be to “impress everyone I work for this sum-mer and maybe have the chance to be of-fered a full time position. Long term goals would be to stay healthy, continue to pur-sue a successful career and enjoy life.” He is hopeful for the future as well and offers, “somewhere in the timeline is full recovery from spinal cord injury.”

If you would like to learn more about Push to Walk, visit their website: www.pushtowalknj.org.

Annie Marosits is a rising senior at Gettys-burg College, expected to graduate in 2011 with a major in English, a writing concentra-tion and a Business Minor. She has volun-teered some of her time at Push to Walk for the last two summers.

Iowa Celebrates...Continued from page 1place in reading the Proclamation of the 20th Anniversary of the ADA. Preston Daniels, Executive Director of Iowa De-partment of Human Rights fulfilled the Governor’s shoes in his absence. After the Proclamation was read Dawn Olson shared why the ADA has been a vital role in her life and how she has obtained and main-tained employment because of this law. Next, Jim Autry took the podium. Jim was one of the individuals present at the signing of the Americans with Disabilities Act. He was sitting in the front row, on that historic day, and was politically active in helping implement the ADA in Iowa. He read part of a publication he wrote on his experience that day in 1990. His sincere words were touching and gave an interesting personal perspective of how lives were truly changed. Next, I was introduced as a guest speaker. I spoke about how the ADA has impacted my life and helped me to pursue my pas-

sion of living life and helping others, with and without disabilities, to do the same. Our fine Senator Tom Harkin arrived to join the celebration. He came from the Downtown Des Moines Farmer’s Market at the 20th Anniversary ADA event. Oh, did I mention Senator Harkin arrived in the middle of my speech? He entered politely and quietly, then sat down in the front row, right in front of me! He then proceeded to look intently straight into my eyes…no pressure there! Although he did not make me nervous, he did make me feel extra hon-ored, privileged and grateful. Honored to have him truly caring about what I had to say; privileged to be able to represent other chair users; and very grateful to be talking directly to one of the authors, and enforc-ers, of the ADA law! It sure was difficult to say the last two sentences of my speech with the lump that had built up in my throat. It was a pleasure to have him there, and then it was his turn to address the crowd. He told us a little about how the ADA law came to be and about that memorable day when this legislation was signed into law 20

years ago. He told us about that ceremoni-ous event and the cheers and tears of joy that came from the crowd. Senator Harkin concluded our event program but stayed to meet those in attendance. He then had to rush off to Northeastern Iowa because a river damn was breaking and more flood-ing was about to happen. Even after the speakers had left, we took advantage of the organizations that had set up interactive tents to share resources and information with us. The audience was filled with com-munity advocates; state agency representa-tives; state government employees; people with disabilities and their families; politi-cal affiliates from multiple elected officials; Congressman Boswell, Senator Grassley, Senator Harkin; Former Lt. Governor Sally Perderson; and the general public. It was a memorable day for me and I am glad I was asked to be part of this 20th Anniversary Celebration.

ADA Employer Workshop Monday, July 26th, at State Capitol in Des Moines. Among other workshops and training ses-sions, Iowa Department of Human Servic-

es held a workshop and public forum on a new mental health plan for Iowa. This was also intended for employers to learn more about the ADA and define what “Reason-able Accommodations” means in the work-place. This was a day of education for all those who attended.

To learn more about these exciting events, activities planned in other parts of Iowa, and the entire ADA recognition campaign, please visit http://www.adaio-wa.webs.com.

Even though the ADA is a remark-able piece of legislation that has positively impacted the quality of life for millions of Americans, there is still even more op-portunities to continue this mission, as we continue to celebrate throughout the year. Thank you for helping Iowa celebrate the 20th Anniversary of the ADA and we look forward to making life even more acces-sible for all people in the future!

Angie Plager is president of NSCIA’s Iowa Chapter, Spinal Cord Injury Association of Iowa (SCIA of Iowa)

Darren Templeton.

7Vol. 7, No. 4

consumer exposIndependence Expo:Improving Life for People with Disabilities and the Aging

United Spinal Association will host the 2010 Independence Expo-Florida on Friday, October 1st & Saturday, October

2nd at the Buena Vista Hotel and Conven-tion Center in Orlando, FL. The entire event is free and open to the public. Independence

Expo-Florida (www.independenceexpo.org) is the region’s premier lifestyle-enhancing Expo designed to promote active living and independence for all people with disabilities and aging Americans.

Registration and more detailed informa-tion is available at IndependenceExpo.org or by calling toll free 800-404-2898. Registra-tion automatically enters attendees in a free raffle to win great prizes, including two (2) round trip tickets to anywhere in the Con-tinental USA Courtesy of AirTran Airways!

Contemporary disability-related work-

shops and demonstrations, designed to edu-cate and liberate will be conducted through-out the 2-day event and include among others:• Fitness, Exercise and Nutrition• Employment, Accessibility and the

Workplace• Accessible Travel & Transportation • Research & Technology • Veterans Issues & Benefits • Housing and Universal Design • ADA @ 20! The Past, Present and Future• Service Animals & You• Consumer Self-Advocacy

The Independence Expo also features over 80 Vendor Exhibits that offer the per-fect opportunity to see and try cutting-edge products that enhance ability and sustain mobility.

United Spinal and NSCIA are both part-ners in the “Open Arms – Raising Awareness of Upper Limb Spasticity” educational cam-paign, partnering with Allergan, Inc. Actor and Open Arms Spokesperson Henry Win-kler will be in attendance as well as leading Neurologist Dr. Atul Patel who will present information on proper treatment options for individuals living with upper limb spas-ticity, which affects people with various dis-abilities and disorders, including multiple sclerosis, spinal cord injury and stroke.

Independence Expo is presented by Unit-ed Spinal Association, a national 501(c)(3) non-profit membership organization formed in 1946 by paralyzed veterans and is dedi-cated to improving the quality of life for all Americans with spinal cord injuries, multiple sclerosis, spina bifida, ALS and post polio. It has played a significant role in writing the Americans with Disabilities Act, made im-portant contributions to the Fair Housing Amendments Act and the Air Carrier Access Act. Membership is free and is open to all individuals with spinal cord disorders.

United Spinal Association and National Spinal Cord Injury Association (NSCIA) work closely on many fronts, including joint operation of Spinal Cord Central, a jointly operated resource center, and Spinal Cord Advocates, a collaborative public policy initiative.

Henry Winkler, national spokesper-son for Open Arms campaign.

Experience Possibilities at Abilities Expo Abilities Expo is in Atlanta October 15 - 17

Thousands of people with disabilities, their families, caregivers, seniors, veter-ans and healthcare professionals are ex-

pected to attend Abilities Expo on Friday, August 27, through Sunday, August 29 at Reliant Center and then in Atlanta Friday, October 15, through Sunday, October 17 at the Cobb Galleria and Convention Cen-ter. Admission is free and show hours will be Friday 11 am to 5 pm, Saturday 10 am to 5 pm and Sunday 11 am to 4 pm.

Abilities Expo has put together an impressive line-up of exhibits, celebrities, workshops, events and activities to appeal to the full spectrum of people with disabili-ties, from children to seniors and everyone

in between. Complimentary rental scooters will be available onsite during show hours and there will be free shuttle rides from four local hotels and the parking lot.

“Abilities Expo’s distinguished 31-year track record of enhancing the lives of peo-ple with disabilities through technology, education and networking will continue in Houston and Atlanta,” said David Korse, president and CEO of Abilities Expo. “Between the adaptive sports demonstra-tions, the interactive assistive technology pavilion, the dynamic workshops and the thousands of products and services on dis-play…this is a must-attend for everyone in the Community.”

The Latest Products and ServicesAttendees expecting cutting-edge products and services for people with all types of disabilities will not be disappointed. They will find mobility products, medical equip-ment, home accessories, essential services, low-cost daily living aids, products for people with visual impairments and much more. The new Assistive Technology Pavil-ion will feature the latest AT products for

people with wide ranges of physical, sen-sory and developmental disabilities. This pavilion is anchored by the Texas Technol-ogy Access Program from the University of Texas at Austin, who is sponsoring an In-teractive Demo Lab. This lab will not only feature an array of breakthrough assistive technologies, it will allow Expo visitors to experience them hands-on.

Relevant WorkshopsA series of compelling workshops which ad-dress pressing disability issues will be offered free-of-charge to all attendees. Sessions will focus on travel, emergency preparedness, adaptive recreation, the new health care bill, accommodations for kids at school, the criteria to getting the best accessible vehicle and that is just for starters.

Super X Fun Course, Comedy, Dancing and More!Abilities Expo does not merely inform, it engages and it entertains. Attendees can test their maneuvering skills on the twists, turns and bumps of the Super X Fun Course, an obstacle course designed for wheelchairs.

They’ll also enjoy the comedy and musical stylings of funny man B.J. Davis and hone their wheelchair line dancing moves. To round it out, there will be interactive adap-tive sports, canine assistance demos, chair yoga, face painting and an Artist Market showcasing the works of local artists with disabilities.

Celebrity EncountersFans will also have the chance to meet folks like Jesse Billauer, extraordinary wheelchair athlete and founder of Life Rolls On, an or-ganization whose mission is to improve the quality of life for young people affected by spinal cord injury utilizing action sports as a platform to inspire infinite possibilities de-spite paralysis.

Abilities Expo also held shows in Los Angeles, Greater New York and Chicagoland. If you missed it this year, visit the show web site to get early access to the 2011 schedule by sign-ing up for Buzz emails. For more information, schedules and directions, visit www.abilities-expo.com.

NSCIA FORUMSDiscussion groups for people with SCI/D

Research – Supporting Quality of Life

New Injuries

Personal Assistance Services

Working/Employment

Disability Culture

Women and Disabilities

Peer Support

Pregnancy and SCI

Equipment

Public Policy – Pending Legislation

Preventing Secondary Conditions

Financial Planning

Do you have questions?

We have answers.

Visit www.spinalcord.org/forum/

8 Vol. 7, No. 4

By Anne H. Moorer

On March 12, Adventist Rehabilitation Hospital of Maryland sent a team of eight rehabilitation experts for a week

long stay to a 250-bed tent hospital in Port-au-Prince, hoping to make a difference for the victims of the January earthquake.

“It was the right time for us to be there,” said Dr. Terrence Sheehan, Chief Medical Officer of Adventist Rehab and team leader for the trip. “Rehabilitation happens now, when the initial trauma of the injury has passed and the recovery and education process can begin.”

The team’s experts also included Hai-tian native and hospital Admissions Su-pervisor, Matchelle Bristol, Rehab Therapy Manager Andra Henning, Nursing Ther-apy Manager Kathy Inglefield, Registered Nurse Parveen Peter and her Radiology Technician husband, Robin, Certified Oc-cupational Therapy Assistant Ray Pharoah and Physical Therapist Sandy Shehadeh. The team came with some of their own supplies as Adventist HealthCare donated vaccines, scrubs and bandages for the trip.

While many types of diagnoses were treated, the team cared for 25 SCI patients total, 17 of which were complete paraple-gics along with seven incompletes and one quadriplegic. In addition to physical trauma, the patients were also coping with the emotional aftermath of the earthquake. Many now faced the added burden of going home with no family or friends to help care for them. Considering that a strong sup-port system is vital to success, this posed a difficult challenge for the team.

“It was very painful,” says Bristol, who

also acted as a Kreyol translator for the team. “I had lost relatives myself from the earthquake and I related to them. We had to focus on hope as much as the care we gave.”

The team decided that the SCI patients would be given regular group therapy ses-sions so that they could offer one another support. The patients enthusiastically re-sponded by helping each other learn exer-cises and transfers while encouraging one another emotionally as they progressed.

While some were able to get wheel-chairs, moving around in the tent proved challenging because of space and outside conditions were even worse. The gravel roads made it very difficult to be mobile on wheels. The team consulted with the other hospital staff and decided that constructing wooden platforms that lead to flatter areas around the tent site would be beneficial. This would improve the patients’ mobility and promote additional means of rehabili-tation.

It also became clear that educating pa-tients about their functional capabilities was a high priority. Kathy Inglefield and Parveen Peter, both nurses, constructed an “SCI Cart” that they took to each patient’s bedside. The cart contained materials used to educate not only patients but their fami-lies and other nurses on the importance of bowel and bladder programs along with pressure ulcer prevention.

“This was not something that anyone told them to do,” Dr. Sheehan explained. “This team knows SCI care, and it was needed right there and then.”

On the therapy side, Ray Pharaoh was affectionately nicknamed “MacGyver” af-ter he designed and had built a set of ad-

justable parallel bars out of scrap wood he found around the hospital site. “It worked out perfectly for them,” said Pharaoh. “I take pride in knowing that it’s getting used even after we left.”

St. Boniface Hospital is a 25-year old facility located in Fond des Blanc. Its mis-sion is to serve the poor and unwanted in Haiti. Administrators became aware that those with spinal cord injuries were an of-ten unwanted group in acute hospitals after the earthquake and agreed to accept SCI patients when no other hospital would.

“The excellence of care they provided really struck me,” recalls Dr. Sheehan, who traveled three hours to the hospital to confirm that is was a better place for SCI patients. “The facility is so clean and ac-cessible.”In all, five patients were transported by he-licopter to St. Boniface, all paraplegic. De-ciding which patients would go was heart

wrenching for the team, but Dr. Sheehan sees this as an opportunity for partnership development. Project Medishare, the orga-nization partially responsible for creating the tent hospital, could provide tertiary care needs and support for St. Boniface Hospital in the future. It is still in the preliminary stages, but the team is hope-ful that other SCI patients will eventually continue care at St. Boniface.“There is more to be done, but it is a great relief that St Boniface could take care of these patients after we left,” reflects Dr. Sheehan. “My hope is to continue my re-lationship with them so that these patients get the treatment they deserve.”

Anne H. Moorer is the marketing coordina-tor for Adventist Rehabilitation Hospital of Maryland and the Editor in Chief for the hospital’s newsletter, “Rehab Reach”. She can be contacted at amoorer@ahm.com.

health

Release Your PotentialSM: Taking Control of Severe Spasticity

When the part of the brain that con-trols voluntary movement is damaged or injured, it can cause spasticity, a

condition that affects more than 12 million people worldwide Spasticity can vary from mild muscle stiffness to uncontrollable leg movements. For some people, the condition is so severe that it is impossible to volun-tarily relax muscles. For these individuals, everyday activities can be challenging. Read the full story to learn more about spasticity and new treatment options.

National Spinal Cord Injury Associa-tion (NSCIA) is partnering with Medtronic and other patient advocacy groups includ-

ing Brain Injury Association of America, MS World, National Stroke Association, and United Cerebral Palsy to develop a program called Release Your PotentialSM, an educational campaign designed to raise awareness of spasticity and encourage pa-tients to seek treatment. You can attend a Release Your PotentialSM seminar to learn about treatment options for severe spastic-ity. If there’s not an upcoming event near-by, you can watch the webcast of an event, right on your computer screen. Or register for an upcoming teleconference and par-ticipate in the event on the phone. During this 90-minute program you’ll hear from a physician who specializes in spasticity management and a patient who is receiving treatment to help manage severe spasticity.

To find an event that will be taking place in your area, please visit www.Re-leaseYourPotential.com. There is no charge to attend these events or watch the web-cast. We encourage you to join us to learn more about how to take control of severe spasticity.

For more information on spasticity, or to talk to an information specialist about this or oth-er SCI/D issues, visit www.spinalcordcentral.org or call 800-962-9629.

Adventist Rehab Sends Experts to Haiti

From left: Scott and Vicki Price (dad and daughter, CP), Jean Wenner (MS), Jason Fowler (SCI), Dr. Jennifer Doble, Physical Medicine and Rehabilitation, Ann Arbor, MI.

9Vol. 7, No. 4

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neurotechnology series

Pressure Sores

By Jennifer French, Neurotech Network

We all know it. The prevention tech-niques were taught in rehab; do pres-sure releases every 15 minutes, conduct

routine skin inspections, protect bony areas, etc, etc. Yes, we know it. That one time you transferred onto that hard surface or had your cushion deflate or hopped into a kayak with-out a cushion, then the pressure sore surfaces. One occurrence can disrupt your life for six months or longer with a cost of care at nearly $100,000 per wound. There are conven-tional prevention techniques like pressure re-leases, cushioning, and reclining wheelchairs. There are also conventional wound healing techniques such as dressings and cleansing treatments, and newer treatments including negative pressure wound therapy and hyper-baric oxygen therapy. In the neurotechnology arena, electrical stimulation has been studied not only for treatment but also for preven-tion. Here we will take a look at both, the role of electrical stimulation to prevent a pressure sore and the application to help heal one.

An Ounce of PreventionElectrical stimulation makes the muscle move and is a tool currently available to achieve this in a paralyzed muscle. However, if surgery has been conducted in the treat-ment of a pressure ulcer, electrical stimula-tion may not be effective due to potentially altered anatomy of the treatment area. An electrical stimulation regime may be com-bined with other methods of pressure sore prevention such as frequent position chang-es, mattresses and cushions to effectively dis-tribute pressures, or custom wheelchair or prosthetic fittings. Regular skin inspection must be continued and the user must stay off any areas of reddened skin, if they appear, until the skin is no longer pink.

Electrical stimulation can be applied in either implantable or external applications. Surface stimulation studies have shown that electrical stimulation can produce positive short-term changes in tissue health such as regional blood flow and pressure distribu-

tion. The use of NMES (Neuromuscular Electrical Stimulation) systems, exercise protocols or standing can prevent sores and build healthy tissue. Surface stimulation ap-plications to combat misuse atrophy and build muscle bulk are commercially avail-able, such as small single or double channel stimulators or FES cycling machines. More information about these may be found under the Fact Sheet titled “Exercise Weak or Para-lyzed Muscles” on the Neurotech Network website. Implanted systems are currently being studied. One study using a system of intramuscular electrodes with percutaneous leads has found to produce additional long-term changes such as gluteal muscle thick-ness increased by 50% and significant in-creases in tissue oxygen levels. These findings suggest that an implantable system may have potential for pressure sore prevention, par-ticularly for individuals who lack sensation or who are physically unable to perform reg-ular independent pressure relief. In essence, this modal of electrical stimulation focuses on the contraction of the muscle which in turn allows the body to create healthy tissue. Clinical trials are being conducted to study implanted and external electrode protocols, wireless devices, exercise treatments.

Healing the WoundAlternative therapies such as ultrasound, ultraviolet light, superficial heating, pulsed electromagnetic fields and electrical stimula-tion have all been studied in the treatment of chronic wounds. Over the past decade, much research has been conducted in the use of electrical stimulation. Research pub-lished by Dr. Luther Kloth of Marquette

University explains the basis of using electri-cal stimulation for the treatment of chronic wounds. “The treatment goal for electrical stimulation is to attract negatively or posi-tively charged cells into the wound area, such as neutrophins, macrophages, epider-mal cells and fibroblasts that in turn will contribute to wound healing processes by way of their individual cellular activities.” The application of electrical stimulation for wound healing has been found to signifi-cantly increase the healing rate and be effec-tive in a large number of cases.

Several studies seek to prove the effective-ness and safety of electrical stimulation in the treatment of chronic wounds. In essence, external stimulation may serve to mimic the failed natural bioelectric currents which allow wound healing to proceed. It has also been proven that given daily, electrical stimulation is effective for enhanced healing rates. How-ever, the success of electrical stimulation is not for every wound. It is dependent on diagno-sis, depth of lesion and severity of infection. To consider this treatment, discuss it with a medical professional prior to beginning any protocol. Practical issues such as cost, time, required training and patient safety concerns need to be addressed. Studies are currently underway for implanted solutions for pre-ventions. There are also commercially avail-able “electronic bandages.” There is an FDA approved device called Procellera, which pro-duces a small amount of current to accelerate the wound healing process. Biofiscia offers an alternative form of electric bandage called POSiFECT; however, it is only available for commercial use in Europe and Canada. With this in mind, there are several clinical trials and devices in development supported by the

many years of research. These options should be discussed with a medical professional trained in wound care.

Jennifer French has a C6-7 SCI and is a user of the implanted stand and transfer system devel-oped by the Cleveland FES Center. She is the co-founder of Neurotech Network, a non-profit organization focusing on education and infor-mation dissemination about neurotechnology for persons with impairments. Their website provides many resources for free, including ed-ucation pages and an internet based searchable database of neurotechnology devices.

{ }RESOURCES

Neurotech Networkwww.NeurotechNetwork.org

NSCIA Fact Sheet for Neurotechnology www.spinalcord.org/news.php?dep=17&page=94

Review Exercise Weak or Paralyzed Muscles Fact Sheet from Neurotech Networkwww.neurotechnetwork.org/educate_exercise.htm

Procellera by Vomaris Innovationswww.procellera.com

POSiFECT by Biofisicawww.biofisica.com/index.php/pg/1

Cleveland FES Center Pressure Sore Prevention Programfescenter.org/index.php?option=com_content&view=article&id=14&Itemid=36

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12 Vol. 7, No. 4

Get Covered. Get in the Game. New Initiative Promotes Enrollment of Eligible Chil-dren in Medicaid and CHIP through School and Com-munity Sports Activities

The U.S. Department of Health and Hu-man Services (HHS) is launching the Get Covered. Get in the Game. initia-

tive in seven pilot states across the country – Colorado, Florida, Maryland, New York, Oregon, Ohio and Wisconsin. The initia-tive is part of the Connecting Kids to Cover-age effort, led by HHS Secretary Kathleen Sebelius, which calls on government and business leaders, health and human services providers, schools, the faith community, and those working with children in any set-ting to find and enroll roughly five million uninsured children in the U.S. who are cur-rently eligible for Medicaid and the Chil-dren’s Health Insurance Program (CHIP).

“Even as we move forward with health insurance reform for all Americans, we must not lose our momentum to insure kids now,” said Secretary Sebelius.

Get Covered. Get in the Game. brings together coaches, schools, and communi-ties to educate families with children who are eligible for Medicaid or CHIP about

the immediate availability of children’s health coverage programs. The National Council of Youth Sports estimates 44 mil-lion boys and girls participate in organized youth sports. Uninsured kids often miss out because they cannot afford the neces-sary physical often required to participate in youth sports or because their families are concerned they would be unable to pay for treatment if their kids get hurt.

“Healthy kids do better in school and in life because they are able to participate fully in activities that develop their bodies and their minds,” Secretary Sebelius said. “Kids should not have to miss out on their favor-ite sports and other activities that get them moving because they lack health insurance coverage. With Medicaid and CHIP, eli-gible children can be covered both on and off the field.”

Get Covered. Get in the Game. will provide coaches with information about CHIP and Medicaid and how families can get their eligible children enrolled. Coaches and others in the school community can serve as a resource to families to help en-sure that children are linked to vital health benefits. CMS will support events launch-ing this initiative, outreach to news outlets across the pilot states, coaches’ trainings, and the placement of promotional materi-als at select youth sports events to help di-rect families to enrollment assistance.

For more information about enrolling in chil-dren’s health insurance programs, please call 1-877-KIDS-NOW (1-877-543-7669) or visit www.InsureKidsNow.gov. Educational materials for coaches and parents are avail-able on this site.

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hospital memberCardinal Hill Rehabilitation Hospital and the Newly Developed Kentucky Appalachian Rural Rehabilitation Network

Beth Hunter, PhD, OTR/L, Patrick Kitzman, PhD, MSPT, Michelle Graybeal, PT, MBA

Of the 420 counties that comprise Ap-palachia, those located in eastern Ken-tucky are among the poorest. Approxi-

mately 80% of these Kentucky counties have a shortage of designated health profes-sionals and healthcare resources to address life changing injuries/illnesses. This short-age is a particular burden to individuals with spinal cord injury (SCI) who require a collaborative inter-professional approach in order to achieve long-term improvement in health outcomes and quality of life. The Kentucky Appalachian Rural Rehabilitation Network (KARRN) has been established as a collaborative team including individuals with SCI, providers who serve them, mem-bers of communities in which they live, ad-vocates, educators, and researchers who in-vestigate these impairments. The goal of the network is to identify, develop and dissemi-nate information and strategies, and maxi-mize resources to improve health outcomes and quality of life for individuals with SCI living in rural Kentucky Appalachian coun-ties. Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky is proud to be one of the founding members of KARRN. This is an important issue for us. In the past five

years approximately 50% of the people who receive inpatient services for SCI at Cardi-nal Hill come from Appalachian Kentucky.

Initial funding for KARRN was through a research grant by the Experimental Pro-gram to Stimulate Competitive Research (EPSCoR; funded through the National Science Foundation). The initial study ex-amined the health and quality of life related supports and challenges from the perspective of individuals with spinal cord injury (SCI) and their families and from the healthcare providers who treat these individuals. The study was conducted by researchers at the University of Kentucky and Cardinal Hill Rehabilitation Hospital. Through the data collected in the study, multiple themes were established with respect to barriers and sup-ports to healthcare in rural KY. These in-cluded the lack of and need for connection

among those with SCI living in the commu-nity, issues related to limited personal and systemic resources, a need for increased spe-cialized SCI knowledge among rural health care providers, and a need for greater advo-cacy for and among this population.

From the groups that participated in the initial study, as well as other interested peo-ple, a network was developed that formally met and conducted an assessment of avail-able community assets for the region (Asset Mapping). Especially given the increased economic uncertainty, it has become more and more important that the surprisingly extensive amount of community-based as-sets/resources be effectively identified and utilized to help improve the quality of life

and community integration of individuals with SCI living in those communities. In addition to the community asset mapping, a formalized shared mission for the network was developed.

Results from the first study and the as-set mapping meeting were used to develop short-term and long-term goals for the group. Short term goals include develop-ing mentor programs for individuals and for providers, developing a network website for information sharing, developing a data base of people impacted by SCI in KY and identifying constituents KARRN is miss-ing. Longer term goals include developing a foundation for future educational programs and research projects for KARRN, advoca-cy, and ultimately improving the quality of life and health outcomes for people living with SCI in these counties.

Education of people with SCI and those who work and live with them is a key component to KARRN. In 2009 KARRN members planned and conducted a confer-ence that addressed topics important for the long-term care of individuals with SCI. These topic areas included:1) The importance of assessing the Quality

of Life and Community Integration of individuals with SCI. Dr. Gale Whit-eneck from Craig Hospital in Denver, CO presented.

2) Importance of Exercise and Nutrition following SCI. Dr. David Gater Jr. from Richmond VAMC & Virginia Com-monwealth University presented.

3) Long-term Healthcare Issues for In-dividuals with SCI. Dr. James Krause from the University of South Carolina presented.

4) Medical Management of SCI Induced Secondary Complications. Dr. Sara Salles from the University of Kentucky and Cardinal Hill Rehabilitation Hospi-tal presented.

5) Developing a Peer-mentor Support Sys-tem. Ms. Inger Ljungberg from the Na-tional Rehabilitation Hospital in Wash-ington, D.C. presented.

6) Additional local partners in vocational rehabilitation specific to KY also pre-sented.

Consistent with the philosophy of the KARRN, this conference was developed for consumers, health care providers, students (our future healthcare providers), educators, researchers, and other community partners to come together and receive and discuss the same information. We believe by doing so we will help to develop a common language that will be essential for the continued devel-opment and growth of the network as well as its effectiveness to influence the healthcare in Eastern KY. A second KARRN SCI confer-ence has been scheduled for October, 2010.

Cardinal Hill Rehabilitation Hospital looks forward to the continued collabora-tion with the University of Kentucky and all the KARRN members as we work to improve health outcomes and quality of life for people with SCI who live in rural Ap-palachian Kentucky.

If you are interested in learning more about the KARRN at Cardinal Hill you can contact: Beth Hunter, PhD, Director of Research or Michelle Graybeal, MBA, SCI Program Manager, Cardinal Hill Rehabilita-tion Hospital.

About the AuthorsBeth Hunter, PhD, OTR/L is the Director of Research at Cardinal Hill Rehabilitation Hos-pital. Her research is aimed at access to care and quality of life among people with disabili-ties who live in rural communities. She is the Assistant Director of KARRN

Patrick Kitzman, PhD, MSPT is an As-sociate Professor in the Department of Reha-bilitation Sciences at the University of Ken-tucky. His research is aimed in improving the long-term healthcare outcomes for persons with neurological impairments living in rural com-munities.

Michelle Graybeal, PT, MBA is the Pro-gram Manager for the Spinal Cord Injury and General Rehabilitation Programs at Cardinal Hill Rehabilitation Hospital.

VOLUNTEER OPPORTUNITIES AT NSCIA

Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done via phone and email, we can work with any motivated volunteer no matter where they live.

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

If you would like more information or to apply to serve as an NSCIA volunteer, please contact Eric Larson at 847-997-2109 or volunteer@spinalcord.org.

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

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

…growing our membership. The Membership Committee works with the VP of Membership to promote the growth and development of the Association’s membership and helps to build and communicate the value of membership in NSCIA.

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

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

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

In addition to our nearly 25,000 individual members, NSCIA thanks its growing list of hospital and organi-zational members, each of which has expressed their

commitment to partner with us in our mission of improv-ing the quality of life for people with spinal cord injury and disorders. For information on Hospital Membership, contact Bill Fertig at bfresource@spinalcord.org or 800-962- 9629. See a full listing of NSCIA Hospital Members

in this issue, or go to www.spinalcord.org.

14 Vol. 7, No. 4

community outreach

NOAA National Weather Service Releases Mid-Year Forecast, Calling for Active Hurricane Season

WASHINGTON - The National Oce-anic and Atmospheric Administra-tion (NOAA) National Weather

Service latest forecast for the 2010 Atlan-tic Hurricane Season, reaffirming its May forecast of an active Atlantic hurricane season. In light of this latest forecast, the Federal Emergency Management Agency (FEMA) reminds Americans living in coastal states that the time is now to ensure their family is prepared for a hurricane or other emergency.

“FEMA continues to work across the administration and with our state and lo-cal partners to ensure they’re ready should a hurricane make landfall,” said FEMA Ad-ministrator Craig Fugate. “But we can only be as prepared as the public, so it’s impor-tant that families and businesses take steps now to be ready. These include developing a communications plan, putting together a kit, and staying informed of the latest fore-casts and local emergency plans. You can’t control when a hurricane or other emer-gency may happen, but you can make sure you’re ready.”

The 2010 Atlantic hurricane season of-ficially began June 1 and runs through No-vember 30. The Eastern Pacific season runs from May 15 through November 30. Three named storms have formed in the Atlantic this year, including the first June hurricane to form in more than a decade. The Na-tional Weather Service forecast released to-day predicted, with 70 percent probability:

•14to20NamedStorms(topwindsof39

mph or higher), including: •8to12Hurricanes(topwindsof74mph

or higher), of which: •4to6couldbeMajorHurricanes(Cat-

egory 3, 4 or 5; winds of at least 111 mph)

Read the most recent forecast from the National Weather Service.

Since before hurricane season started, FEMA personnel have been actively engaged with state and local officials in coastal states to ensure they have the support and resourc-es necessary to prepare for and respond to a tropical storm or hurricane. Coordination and planning this season has involved con-sideration of the effects that the BP oil spill could have on the response capabilities and recovery scenarios.

FEMA encourages everyone, regardless of whether they live in a hurricane-prone area, to take steps to ensure their family, homes and businesses are prepared for a possible emergency. Important items to have ready in case of an emergency include a battery-powered radio (like a NOAA Weather Radio), flashlight, extra batter-ies, medicines, non-perishable food, hand-operated can opener, utility knife and first aid supplies. Important documents, such as medical records, contracts, property deeds, leases, banking records, insurance records and birth certificates, should be copied and kept in a safe place.

For more information on individual and fam-ily preparedness, visit www.Ready.gov.

Follow FEMA online at twitter.com/fema, facebook.com/fema, and youtube.com/fema. Also, follow Administrator Craig Fugate’s ac-tivities at twitter.com/craigatfema. The social media links provided are for reference only.

FEMA does not endorse any non-government websites, companies or applications.

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

{ }DISABILITY SPECIFIC PREPAREDNESS RESOURCES

Emergency preparedness is the preparation and planning necessary to effectively handle an emergency. It involves individuals develop-ing an emergency plan that identifies services they require, and what resources they need to have on hand in case of an emergency. Emergency plans should be written and given to loved ones, care givers and other relevant parties.

As you prepare your personal preparedness plan you can get up to date information and assistance through DisabilityPreparedness.gov

But when it comes to emergency planning, you know yourself and your needs the best, so you are the ideal person to create your person-alized emergency preparedness plan. When creating your personal preparedness plan, it is vital to identify the following:

1. Responsible party for carrying out specific actions;2. Personnel, equipment, supplies, medications and needs specific to an individual;3. Emergency contact information;4. Other resources available for use in the emergency; and5. An outline of how all actions will be coordinated.

Specific resources include tips on evacuating wheelchair users including, but not limited to:1. Power vs manual chairs2. Lifting of wheelchair with or without user3. What parts of the wheelchair are safe to use in lifting4. Evacuation on stairwells5. Weight considerations6. Safety (both of wheelchair user and assistant) considerations

Additional considerations and resources include:1. Build your ‘Go-Kit’ now in the event you need to evacuate rapidly. Suggested contents include all medical supplies, medicines

and equipment you will need for at least 7 days AND ready cash. Experience after hurricanes Katrina and Rita have shown that ATM’s or banks may not be functioning and you may not be able to access your regular accounts or benefit sources for some time.

2. FEMA Office of Disability Integration and Coordination (ODIC)3. Spinal Cord Central - Information specialists can connect you to NSCIA’s ‘Go-Kit’ outline for suggestions and provide ad-

ditional resources in your region. Contact us at help@spinalcordcentral.org or by phone at 800-962-9629 8:30 -5:00 M-F except federal holidays.

15Vol. 7, No. 4

research

By Smitha Raghunathan, (with permission from Voice of America)

Researchers in Israel have developed an electronic controller that allows se-verely disabled people to control their

wheelchairs or computers with a simple sniff of the nose.

Injury or disease can leave people para-lyzed virtually from the neck down, often without any impairment of their mental capabilities. This new technology uses a hypersensitive device that allows severely disabled people to communicate and move about, using their nose.

Smell awayQuadriplegia can leave individuals without the use of their limbs or torso, but the de-gree of control from the neck up varies.

Even more severe is the “trapped in” or “locked in” syndrome, where individuals are completely paralyzed but still have full use of their mental faculties.

There are several existing technologies that can help such people with commu-nication and mobility. These systems can be controlled by changing the position of the tongue, moving the eye, or, sipping or puffing on a straw. However, sniff technol-ogy presents new opportunities.

Noam Sobel is a professor at the De-partment of Neurobiology at the Weiz-mann Institute of Science in Israel, where this technology was developed. His lab dis-covered that people can actually sniff very fast and very accurately, producing a very rich signal.

Sniff control“It contains digital information. You have sniff onset and sniff offset, and you can sniff in and out. And it also contains ana-log information because you can sniff with greater or lesser magnitude, or for faster or shorter durations,” he explains. “And, so, all those pieces of information together can be used to generate an incredible wealth of control.”

So long as they still have control of their soft palate - the soft tissue at the back of the mouth - many completely para-lyzed people can control whether air flows through their nose or their mouth. For many users, this can come easily, perhaps because sniffing is controlled similarly to language in the brain.

Sobel demonstrates this over the phone, talking in a very nasal tone while his soft palate is closed, and then speaking normally when his soft palate is open. With practice, he says, it is possible to control a wheelchair and talk at the same time, something that is

difficult to do with other technologies such as tongue control or sip-puff.

Price is rightControllers activated by eye movements are currently the best communication op-tion for “trapped-in” individuals, but So-bel’s sniff technology offers an alternative.

With the use of a special mask, trapped-in individuals on a respirator can open or close their soft palate, changing the air pressure in the mask. Electronics measure these changes in pressure, which can be used as a signal to a communication device.

Another benefit of this technology is cost. Sobel built a stand-alone sniff controller for an electric wheelchair for $358. That’s significantly cheaper than an eye tracking device, which can cost up to $20,000.

Sobel estimates that if sniff technol-ogy is mass-produced, it could be made for only tens of dollars.

Immediate impactEric Larson of the National Spinal Cord Injury Association works with researchers to help them understand the needs of indi-viduals with spinal cord injuries.

He says that work like Sobel’s is excit-ing to see, since it can have an immediate, tangible impact on lives.

“Part of our role is to make people aware of new technologies, new opportu-nities like this, while at the same time, we need to manage expectations. But if people know that it’s in the pipeline, it can bring people a sense of hope.”

And, in this case, hope for quadriple-gics and others living with severe disabili-ties might be just a sniff away.

Related Information and Resources‘Sniff control’ for power wheelchair control or computer applications may offer addition-al alternatives over existing technologies such as sip/puff or voice activation which will not work for everyone.

“Recently, Spinal Cord Central (SCC) information specialists have worked with a consumer from Germany with SCI and par-tial locked-in syndrome for whom this new technology may offer options beyond what is currently available”, says SCC Manager, Bill Fertig.

View the ‘sniff control’ interface in the ‘latest news’ section of Spinal Cord Central’s SCI Health and Wellness Knowledge Book at www.spinalcordcentral.org. You may also pose your question directly to an SCC information specialist by email at help@spinalcordcentral.org or by phone at 800-962-9629 8:30 – 5:00 M-F, except federal holidays.

An Online Magazine @ www.specialiving.com

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e-mail: gareeb@aol.comP.O. Box 1000, Bloomington, IL 61702

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Researchers Use Sniffing to Control Wheelchairs and Computers for the Severely Disabled

Got a Story? Share it!

NSCIA is looking for first hand member stories that carry a message of hope

and tangible support for people with new spinal cord injuries or disease.

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

16 Vol. 7, No. 46 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

Geron to Proceed ...Continued from page 1 completed an additional confirmatorypreclinical animal study to test the new markers and assays, and subsequently sub-mitted a request to the FDA for the clinical hold to be lifted.

GRNOPC1, Geron’s lead hESC-based therapeutic candidate, contains hESC-derived oligodendrocyte progenitor cells that have demonstrated remyelinating and nerve growth stimulating properties lead-ing to restoration of function in animal models of acute spinal cord injury (Journal of Neuroscience, Vol. 25, 2005).

“The neurosurgical community is ready to begin the clinical testing of this new ap-proach to treating devastating spinal cord injury,” said Richard Fessler, M.D., Ph.D., professor of neurological surgery at the Feinberg School of Medicine at North-western University. “We know that demy-elination is central to the pathology of the injury, and its reversal by means of inject-ing oligodendrocyte progenitor cells would be revolutionary for the field. If found to be safe and effective, the therapy would provide a viable treatment option for thou-sands of patients who suffer severe spinal cord injuries each year.”

The GRNOPC1 Clinical ProgramPatients eligible for the Phase I trial must have documented evidence of functionally complete spinal cord injury with a neuro-logical level of T3 to T10 spinal segments

and agree to have GRNOPC1 injected into the lesion sites between seven and 14 days after injury.

Although the primary endpoint of the trial is safety, the protocol includes second-ary endpoints to assess efficacy, such as im-proved neuromuscular control or sensation in the trunk or lower extremities. Once safety in this patient population has been established, Geron plans to seek FDA ap-proval to extend the study to increase the dose of GRNOPC1, enroll subjects with complete cervical injuries and expand the trial to include patients with severe incom-plete (ASIA Impairment Scale grade B or C) injuries to enable access to the therapy for as broad a population of severe spinal cord-injured patients as is medically ap-propriate.

Geron has selected up to seven U.S. medical centers as candidates to participate in this study and in planned protocol ex-tensions. The sites will be identified as they come online and are ready to enroll sub-jects into the study.

Other Potential Neurological Indications for GRNOPC1In addition to spinal cord injury, GRNOPC1 may have therapeutic utility for other central nervous system indica-tions. Geron has established a number of collaborations with academic groups to test GRNOPC1 in selected animal models of human disease for which there is a strong rationale for the approach.

Alzheimer’s Disease: Alzheimer’s disease is a progressive, fatal, degenerative disor-der that attacks the neurons in the brain,

resulting in loss of memory, cognitive function such as reasoning and language, and behavioral changes. According to the Alzheimer’s Association an estimated five million people in the United States have Alzheimer’s disease. GRNOPC1 is being evaluated in animal models of Alzheimer’s disease in collaboration with Professor Frank M. LaFerla, Director of the Institute for Memory Impairments and Neurologi-cal Disorders (UCI MIND) at the Univer-sity of California, Irvine.

Multiple Sclerosis (MS): MS is an auto-immune disease that causes demyelination of nerve axons in the brain and spinal cord often progressing to physical and cognitive disability. There is currently no known cure for the disease. According to the National Multiple Sclerosis Society there are about 400,000 people in the United States with MS. GRNOPC1 is being tested in a non-human primate model of MS in collabora-tion with Professor Jeffery D. Kocsis of the Departments of Neurology and Neurobiol-ogy at Yale University School of Medicine and the Department of Veterans Affairs.

Canavan Disease: Canavan disease is a fatal neurological disorder that belongs to a group of genetic disorders called leuko-dystrophies, characterized by the abnormal development or degeneration of myelin. Symptoms of Canavan disease present in the first six months of life and death usually occurs at 3 – 10 years of age. GRNOPC1 is being tested in a rodent model of Canavan disease in collaboration with Dr. Paola Le-one, Director of the Cell and Gene Ther-apy Center, at the University of Medicine and Dentistry of New Jersey.

Background on GRNOPC1Additional information on Geron’s hESC programs and GRNOPC1 is available at Geron’s website www.geron.com.

About GeronGeron is developing first-in-class biophar-maceuticals for the treatment of cancer and chronic degenerative diseases, including spinal cord injury, heart failure and diabe-tes. The company is advancing an anti-can-cer drug and a cancer vaccine that target the enzyme telomerase through multiple clinical trials in different cancers. For more information, visit www.geron.com.

This news release may contain forward-looking statements made pursuant to the “safe harbor” provisions of the Private Se-curities Litigation Reform Act of 1995. In-vestors are cautioned that statements in this press release regarding potential applications of Geron’s human embryonic stem cell tech-nology constitute forward-looking state-ments that involve risks and uncertainties, including, without limitation, risks inherent in the development and commercialization of potential products, uncertainty of clinical trial results or regulatory approvals or clear-ances, need for future capital, dependence upon collaborators and protection of our intellectual property rights. Actual results may differ materially from the results antici-pated in these forward-looking statements. Additional information on potential factors that could affect our results and other risks and uncertainties are detailed from time to time in Geron’s periodic reports, including the quarterly report on Form 10-Q for the quarter ended March 31, 2010.

17Vol. 7, No. 4

legal

Deciding to Join a Clinical Trial: Your Rights and Priorities

By Len Zandrow, NSCIA General Counsel

At any given time, there are dozens of on-going studies involving research subjects with spinal cord injuries. The choice of

whether to participate in an experimental research study can be one of the most im-portant life decisions a person makes. Here are some key points to keep in mind if you’re considering participation in a trial.

There should be an established proto-col or plan which specifies the length of the study, what types of persons may partici-pate, and the schedule of tests, treatments, and procedures.

Eligibility criteria for SCI research stud-ies may include factors like age, gender, ex-tent and duration of injury, previous treat-ment history, and presence or history of other medical conditions. Because many major studies are funded, at least in part, by government grants, guidelines typically specify that sponsors may not discriminate against candidates on the basis of improper, non-medical criteria.

E x p e c t e d benefits need to be weighed against poten-tial risks. As-suming that the research study is well designed and implement-ed, participants might obtain the benefit of access

to promising new therapies before they are generally available to the public. They may receive expert medical care at leading facili-ties not otherwise covered by their medical insurance. Participation offers the research subject the prospect of improved health and quality of life. It can also appeal to a patient’s altruistic desire to help others by contributing to the general state of medical knowledge.

Of course, research studies can also in-volve substantial risks. There may be pain-ful, serious, or even life-threatening side af-fects to medical experiments. Adverse side affects may be both immediate and long-term and may not be fully known at the time of participation. Participation may also be burdensome, possibly involving a sub-stantial amount of time and effort for treat-ments and follow-up visits.

Of course, there is also no guarantee of success. Experimental treatments may not benefit the patient at all, especially in a “blind” pharmaceutical study in which some participants do not receive the actual medication, but rather a “placebo.”

Most research studies are sponsored by

medical institutions, foundations, the phar-maceutical industry, or Federal agencies such as the NIH, and are governed by comprehen-sive ethical and legal standards. For example, every clinical trial must be approved and monitored by an Institutional Review Board (IRB) composed of independent physicians, educators, and community advocates. The IRB must initially approve the study’s pro-tocol and periodically review its findings to ensure that the researchers are following the established guidelines and procedures.

Research candidates must understand their legal rights and obtain informed con-sent before participating in any clinical trial. The research candidate should meet with a member of the clinical team, preferably a physician, and be advised in a reasonable manner of all significant medical informa-tion that the physician possesses — or rea-sonably should possess — that is material to an intelligent decision whether to par-ticipate in the study. It might be helpful for a family member or friend to participate in this meeting for support and possible fol-low-up questions. Suggested lines of inquiry include: • Purpose and duration of the study• Eligibility criteria• Details regarding the medical proce-

dures involved• Likely benefits and risks, and possible

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

formed• Prior results of comparable studies• Person or entity paying for the treat-

ments

• Whether the participant must bear any out-of-pocket expenses

• How participant can monitor his or her personal progress

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

of ultimate resultsThe study’s clinical team will be com-

posed of doctors, nurses, social workers, and other professionals. They should check the health of the participant at the beginning of the trial, provide directions for participat-ing in the study, monitor the participant throughout the trial, and perform follow-up tests. To protect confidentiality, his or her name should remain secret and not be dis-closed in any published reports.

During the study, participants should continue to consult with their primary care physicians, as necessary, to ensure that their other medications or treatments do not con-flict with the research protocol. Even after making a commitment to participate, they are free to change their minds. Informed consent should not be viewed as a binding contract; one can leave an experimental trial at any time. When withdrawing from the study, however, the participant should in-form the research team and offer his or her reasons for leaving the study.

Participating in a research study can of-fer profound benefits to an individual with SCI, and to the disability community at large. When carefully conceived and per-formed, research studies provide one of the fastest and safest ways to test new theories for improving quality of life with SCI, yet one must seriously consider these key legal issues to consider before taking part in any research study or clinical trial.

18 Vol. 7, No. 4

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

KANSASCHAPTERSGreater Kansas City SCIA5701 West 110th St,Overland Park, KS. 66211Phone: (913) 491-5667Contact: Linda KlaiberEmail: Linda.Klaiber@healthsouth.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

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.htmSpaulding 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 KlaiberEmail: Linda.Klaiber@healthsouth.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 03053Phone: (603) 216-3920Fax: (603) 432-1549Contact: 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

Northwest Ohio Chapter, NSCIA13745 Archbold Whitehouse RdSwanton, Ohio 43558Phone: (419) 875-4029Contact: Zena Cole, PresidentWebsite: www.nwonscia.orgE-mail: Ogie101@aol.comPhone: (419) 531-6401Contact: Becky GayE-mail: beckkevn1@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, South Carolina,Phone: (803) 385-2270Contact: Bill McDonoughE-mail: leftwich@sccoast.net

Florence, SC Area SCI Support GroupPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: ronnnie1mc@yahoo.com

Greenville Area SCI Support Group190 McCall Road, Honea Path, South Carolina, 29654Phone: (864) 369-2791Contact: Byron ArmentroutE-mail: wheelin19@aol.com

North Charleston Area SCI Support Group172 Bayboro Circle, Goose Creek, South Carolina, 29445Phone: (843) 863-1165Contact: Ruth JonesPhone: (843) 792-2605Contact: Richard AustE-mail: aust@musc.edu

Orangeburg, SC Area SCI Support Group627 Flatwoods Road, Bowman, SC 29018Phone: (803) 829-2043Contact: Rebecca FelderE-mail: Rebecca.felder@yahoo.com

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

York/Rock Hill Area SCI Support GroupPhone: (803) 366-5659222 S. Herlong Avenue, Rock Hill, SC 29732Contact: Bob AldersE-mail: bobcatawba@comporium.net

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.

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