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Vol. 7, No. 4

www.spinalcord.org

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Vol. 7, No. 4

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

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

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he U.S. Food and Drug Administration (FDA) has notified Geron Corporation (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 establish the safety of GRNOPC1 in patients with “complete” American Spinal Injury Association (ASIA) Impairment Scale grade A subacute thoracic spinal cord injuries.

“We are pleased with the FDA’s decision to allow our planned clinical trial of GRNOPC1 in spinal cord injury to proceed,” 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 function by the injection of hESC-derived oligodendrocyte progenitor cells directly into the lesion site of the patient’s injured spinal cord. Additionally, we are now formally exploring the utility of GRNOPC1 in other degenerative CNS disorders including Alzheimer’s, multiple sclerosis and Canavan disease.” The clinical hold was placed follow-

Iowa Celebrates 20th Anniversary of ADA

across our great state, and some are still yet to come! After two Bingo Night fundraisers, last April, the volunteer ADA Planning Committee (consisting of professionals, volunteers, 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 Royals, 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 individuals with physical and mental disabilities from discrimination. A pre-game reception, at each game, included entertainment and socializing. At the Des Moines Cubs Stadium was a performance by the New Visions Dance Troupe; disability organizations had tables at each gate to hand out information 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-

By Angie Plager, with additional content provided by www.adaiowa.webs.com

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owa 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 disabilities, 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 prompted in attitudinal barriers and perspectives of people in society. Signed into law July 26th 1990, the ADA affords protections to persons 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

ing results from a single preclinical animal study in which Geron observed a higher frequency 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 markers and assays as additional release specifications for GRNOPC1. The company

rated free bags filled with information about services offered for people with disabilities and their families. Senator Tom Harkin assisted at this event. ADA Anniversary Celebration Saturday, 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 interactive, 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

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President Barack Obama signs Executive Order increasing federal employment of individuals with disabilities, 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)


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Vol. 7, No. 4

chapter news

SCILIFE STAFF MANAGING EDITOR: K. Eric Larson STAFF WRITER: Santina Muha DESIGN AND LAYOUT: Nikolai Alexeev ADVERTISING SALES: Megan Bell DATA INPUT: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFF CHIEF EXECUTIVE OFFICER: K. Eric Larson RESOURCE CENTER MANAGER: Bill Fertig INFORMATION SPECIALIST: Daniela Castagnino INFORMATION SPECIALIST: Charleene Frazier INFORMATION SPECIALIST: Jason Hurst COMMUNICATIONS ASSOCIATE: Santina Muha WEB SERVICES/PUBLISHING: J. Charles Haynes, JD WEBMASTER: Nikolai Alexeev

BOARD OF DIRECTORS Executive Committee

PRESIDENT: Patrick Maher IMMEDIATE PAST PRESIDENT: Harley Thomas (1939 – 2007) CHAIR, EXECUTIVE COMMITTEE: Andy Hicks VICE-PRESIDENT FOR CHAPTERS: David Estrada SECRETARY: Janeen Earwood TREASURER: David Estrada CEO/EXECUTIVE DIRECTOR: K. Eric Larson VICE-PRESIDENT FOR COMMUNICATIONS: Paul Aronsohn VICE-PRESIDENT FOR DEVELOPMENT: Carmen DiGiovine, PhD VICE-PRESIDENT FOR MEMBERSHIP: Debbie Myers

Directors Pamela Ballard, MD Mary Brooner John Fioriti Gretchen Fox Veronica Gonnello Christine N. Sang, M.D., M.P.H

General Counsel Leonard Zandrow, Esquire

SCILife PUBLISHER PUBLISHER: J. Charles Haynes, JD SCILife is a publication of the National Spinal Cord Injury Association One Church Street, Ste. 600 Rockville, 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 related 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 endorsement of organizations, products or services. If you have any questions related to your membership with NSCIA, or would like to join, contact us at HDI 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 77219-1401 voice: 713.526.6900 fax: 713.526.7787 email: info@spinalcord.org or website: www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787 email: chaynes@hdipub.com www.hdipub.com SCILife © 2010

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

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

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SCIA’s Michigan chapter, the Michigan Spinal Cord Injury Association (MSCIA), hosted its first membership development and fundraising event, “Rolling with Promise”, at the San Marino Club in Troy on Thursday, July 15. Though it was the nonprofit organization’s very first event since being established in late 2009, more than 100 people attended, 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 Disability” column, was the special guest speaker for the evening. While guests were served a five-course dinner that included hot appetizers and dessert, AmeriCare Medical President Gregory Jamian conducted a short, informative presentation 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 organizations 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 information that impacts Michigan and our residents,” says Stacey Murphy, vice president of corporate development for AmeriCare Medical. The MSCIA has received the full endorsement of the National Spinal Cord Injury Association (NSCIA), the nation’s oldest advocacy group for people with spinal 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, education 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 comprehensive healthcare management company in Troy, MI offering a total spectrum of outpatient and home healthcare programs and services, sponsored “Rolling with Promise” and was the primary local force behind establish-

ing a Michigan chapter of the National Spinal Cord Injury Association (NSCIA). Because many of the patients that AmeriCare works with have spinal cord injuries or disease, the company understands the need to have specialists to help maintain the lifestyle of those living with SCI&D.

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 spinal cord injury research and further support the cause of the MSCIA. Chapter leaders

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). AmeriCare Medical and its employees have all worked together to set up a website, www.mispinalcord.org, devoted to providing information, contacts, and resources to those with SCI&D in Michigan. The event successfully increased the MSCIA membership base, providing even

hope to make this an annual event. For more information about the MSCIA or AmeriCare Medical, please contact Cristina 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 GUARANTEE you receive every issue of SCILife is to subscribe! Only $15.00 for all six annual issues! Visit www.spinalcord.org/scilife


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Vol. 7, No. 4

from the executive director

Why “How’s the Weather?” is Not Small Talk By K. Eric Larson, Executive Director and CEO, NSCIA

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ne of the stories you’ll see later in this issue is about the National Oceanic and Atmospheric Administration (NOAA) recent reaffirmation that it expects an active hurricane season this year. Why do we care, you ask? Good question and a timely one as well, given that this is the five year anniversary 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 manage 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 immediate 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 Injury Association (NSCIA) was a leader in serving the thousands of people with disabilities impacted by Hurricane Katrina and other recent natural disasters. Through The Brian Joseph McCloskey Katrina Survivors 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 hurricanes. The fund served dozens of hurricane survivors with disabilities in a wide range of areas. Later, NSCIA was provided case management 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 agencies 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 solution. 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 support 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 Administrator 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 administration to include a new position in FEMA of director, office of disability integration and coordination – and an equally positive step to fill that position with Marcie Roth, who is a national leader and passionate advocate for people with disabilities on these issues. More recently, FEMA announced it

would hire 10 Regional Disability Integration Specialists to support and facilitate FEMA’s commitment to inclusive emergency 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 potential New Madrid fault event. I’m pleased to say that most of the people 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 understand preparedness information, hear alerts and warnings, utilize accessible transportation 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 situations, 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 planning that is inclusive of the participation and requirements of people with access and functional needs.

HOSPITAL MEMBERS

NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. 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. ALABAMA UAB MODEL SPINAL CORD INJURY CARE SYSTEM-SPAIN REHABILITATION CENTER Birmingham, AL (205) 934-3283 CALIFORNIA NORTHRIDGE HOSPITAL MEDICAL CENTER Northridge, CA (818) 885-8500 Ext. 3669 REGIONAL SCI CARE SYSTEM OF SOUTHERN CALIFORNIA Rancho Los Amigos Downey CA (582) 401-7111 SANTA CLARA VALLEY MEDICAL CENTER (ADD) San Jose, CA. (408) 793-6434 COLORADO THE ROCKY MOUNTAIN REGIONAL SPINAL INJURY SYSTEM-CRAIG HOSPITAL Englewood, CO (303) 789-8306 WASHINGTON, DC NATIONAL CAPITAL SPINAL CORD INJURY MODEL SYSTEM National Rehabilitation Hospital Washington, DC (202) 877-1425 (202) 877-1196 FLORIDA BROOKS REHABILITATION HOSPITAL-UNIVERSITY OF NORTH FLORIDA Jacksonville, FL (904) 858-7600

PINECREST REHABILITATION HOSPITAL (CARF) Delray Beach, FL (561) 495-0400 GEORGIA GEORGIA REGIONAL SPINAL CORD INJURY CARE SYSTEM-SHEPHERD CENTER, INC. Atlanta, GA (404) 350-7591 ILLINOIS MEMORIAL MEDICAL CENTER. NEUROMUSCULAR SCIENCES & ORTHOPEDIC SERVICES Springfield, IL 217-788-3000 INDIANA REHABILITATION HOSPITAL OF INDIANA Indianapolis, IN 317-329-2000

MARYLAND

NEW YORK

ADVENTIST REHABILITATION HOSPITAL

MOUNT SINAI SPINAL CORD INJURY

OF MARYLAND

MODEL SYSTEM

Rockville, MD

New York, NY

(240) 864-6000

(212) 659-8587

KERNAN ORTHOPEDICS AND REHABILITATION

NORTH CAROLINA J. PAUL STICHT CENTER ON AGING AND REHABILITATION Winston-Salem, NC (888) 605-9568

Baltimore, MD 888-453-7626 MICHIGAN UNIVERSITY OF MICHIGAN MODEL SPINAL CORD INJURY CARE SYSTEM Ann Arbor, MI (734) 763-0971 MISSOURI THE REHABILITATION INSTITUTE OF KANSAS CITY Kansas City, MO (816) 751-7900

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

NEBRASKA MADONNA REHABILITATION HOSPITAL Lincoln, NE (402) 486-8296

LOUISIANA HEALTHSOUTH REHAB HOSPITAL OF BATON ROUGE Baton Rouge, LA (225) 927-0567 TULANE INPATIENT REHABILITATION CENTER Metairie, LA (504) 988-5800

IMMANUEL REHABILITATION CENTER Omaha, NE (402) 572-2121 NEW JERSEY NORTHERN NEW JERSEY SPINAL CORD INJURY SYSTEM KESSLER INSTITUTE FOR REHAB West Orange, NJ (973) 243-6849

MOSES CONE HEALTH SYSTEM Greensboro, NC (336) 832-7000 CAROLINAS REHABILITATION Charlotte, NC (704) 355-4300 OHIO NORTHEAST OHIO REGIONAL SPINAL CORD INJURY SYSTEM Cleveland, OH (216) 778-8781 PENNSYLVANIA UPMC INSTITUTE FOR REHABILITATION & RESEARCH Pittsburgh, PA (877) 287-3422 THE WILLIAMSPORT HOSPITAL AND MEDICAL CENTER GIBSON REHABILITATION CENTER Williamsport, PA. (570) 321-1000

SOUTH CAROLINA HEALTHSOUTH REHABILITATION HOSPITAL Columbia, SC (803) 254-7777 TEXAS BAYLOR INSTITUTE FOR REHABILITATION Dallas, TX. (800) 422-9567 TIRR MEMORIAL HERMANN (THE INSTITUTE FOR REHABILITATION AND RESEARCH) Houston, TX (713) 799-5000 VIRGINIA INOVA MOUNT VERNON HOSPITAL Alexandria, VA 703-664-7592 WISCONSIN FROEDERT MEMORIAL LUTHERAN HOSPITAL Milwaukee, WI (414) 805-3000

ORGANIZATIONAL MEMBERS OF NSCIA

FLORIDA SCI RESOURCE CENTER St. Petersburg, FL (866) 313-2940 PROJECT WALK Carlsbad, CA (760) 431-9789 PUSH TO WALK Riverdale, NJ (862) 200-5848 Quest to Walk Overland Park, KS (913) 451-1500


Vol. 7, No. 4

from the president

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

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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 concern. I was recently at a reception hosted by Speaker of the House Nancy Pelosi to celebrate the 20th anniversary of the signing 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 Poll

I 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 associated 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 surrounding the ADA and its implementation

in the Midwest. Unfortunately it was very disappointing. Of the eleven core subject areas that were graded, ranging from opportunities 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 noted 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 responsibilities under the ADA • Providing accommodations for employment • 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 disabilities into the technology sector, I was immediately concerned that three of the top five priorities were very directly related to improving the overall employment picture for people with disabilities, two of them being obvious in more opportunities and reasonable 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 transportation 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 accommodation 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 proverbial sand. I am always concerned with logistics when I consider one of our candidates for a position, knowing that whether they can get to the job often trumps their ability to do the job well. The latter is irrelevant if they don’t have access to accessible transportation at a reasonable cost. Unfortunately this is often a challenge for candidates 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 extremity strength or movement to drive safely, they have upper or lower extremity spasticity or contractions that make it challenging to drive, they lack acute enough vision to drive, or their disability or condition otherwise 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 professional opportunity. It was to support a group of developers for a very large, multinational client in the energy industry. He was very excited about the role. My consultant 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 accessible 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

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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 availability, 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 Planners

In January of this year the Innovation in Accessible Transport for All conference was conducted in Washington, DC. It included global leaders in planning, transportation, 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 “practical outcomes, rhetoric to reality, applying 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 challenge – 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 consultants, and so many tens of thousands of other 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”?

THANK YOU NSCIA BUSINESS MEMBERS NSCIA 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!

GOLD BUSINESS MEMBERS

SILVER BUSINESS MEMBERS

BRONZE BUSINESS MEMBERS

INVACARE www.invacare.com

FREE WHEEL www.gofreewheel.com

MOBILITY WORKS www.mobilityworks.com

THE ROHO GROUP www.therohogroup.com SYNAPSE BIOMEDICAL www.chesrehab.com

UNITED SEATING AND MOBILITY www.unitedseating.com

CHESAPEAKE REHAB EQUIPMENT www.chesrehab.com

MYPLEASURE www.mypleasure.com

TILITE www.tilite.com

PRIDE MOBILITY www.pridemobility.com

WYN PRODUCTS www.wyngproducts.com

SUNRISE MEDICAL www.sunrisemedical.com

FREE WHEEL www.gofreewheel.com

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 volunteers Please contact us at volunteer@spinalcord.org


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Vol. 7, No. 4

Redefining Possibilities: A Family Affair By Annie Marosits

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arren Templeton is a twenty four year old young man preparing to enter his second year in the Rutgers University two-year Master of Business Administration (MBA) program. After completing one year in the program, Darren is doing well and is happy with his choice of Rutgers. “The professors are dedicated to their students and the class gets along really 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. Darren graduated from Ramapo College in 2009 with a degree in Finance. He is currently 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, Darren 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 description of Darren’s busy life is the fact that he is living with a spinal cord injury. In summer 2004, after diving into shallow water, Darren was airlifted to Atlantic City Medical Center where it was determined that he had broken his neck at C5. Within 24 hours, Darren was transferred

Iowa Celebrates... Continued from page 1

place in reading the Proclamation of the 20th Anniversary of the ADA. Preston Daniels, Executive Director of Iowa Department 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 maintained 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-

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 Center in Atlanta, where he began the grueling task of rehabilitation. After completing almost 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 thereafter, he learned of a facility located in Carlsbad, CA called Project Walk. Project Walk allowed Darren to work his entire body out again, something that was, and still is a priority 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 spinal 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 YorkNew Jersey area that empowers people with spinal cord injuries to realize their individual 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 improved their quality of life in so many different 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, Darren remarked, “My family has given me the opportunity to pursue whatever I want including 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 athlete, 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 athletes such as Lance Armstrong give Darren 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 summer and maybe have the chance to be offered a full time position. Long term goals would be to stay healthy, continue to pursue 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.

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 honored, 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 enforcers, 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 ceremonious 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 flooding 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 community advocates; state agency representatives; state government employees; people with disabilities and their families; political 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 sessions, 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 “Reasonable Accommodations” means in the workplace. 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.adaiowa.webs.com. Even though the ADA is a remarkable piece of legislation that has positively impacted the quality of life for millions of Americans, there is still even more opportunities 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 accessible for all people in the future!

Darren Templeton.

Annie Marosits is a rising senior at Gettysburg College, expected to graduate in 2011 with a major in English, a writing concentration and a Business Minor. She has volunteered some of her time at Push to Walk for the last two summers.

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


Vol. 7, No. 4

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

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nited Spinal Association will host the 2010 Independence Expo-Florida on Friday, October 1st & Saturday, October 2nd at the Buena Vista Hotel and Convention Center in Orlando, FL. The entire event is free and open to the public. Independence

Henry Winkler, national spokesperson for Open Arms campaign. 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 information is available at IndependenceExpo.org or by calling toll free 800-404-2898. Registration automatically enters attendees in a free raffle to win great prizes, including two (2) round trip tickets to anywhere in the Continental USA Courtesy of AirTran Airways! Contemporary disability-related work-

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

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housands of people with disabilities, their families, caregivers, seniors, veterans and healthcare professionals are expected 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 Center. 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 disabilities, from children to seniors and everyone

shops and demonstrations, designed to educate and liberate will be conducted throughout 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 perfect opportunity to see and try cutting-edge products that enhance ability and sustain mobility. United Spinal and NSCIA are both partners in the “Open Arms – Raising Awareness of Upper Limb Spasticity” educational campaign, partnering with Allergan, Inc. Actor and Open Arms Spokesperson Henry Winkler 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 spasticity, which affects people with various disabilities and disorders, including multiple sclerosis, spinal cord injury and stroke. Independence Expo is presented by United Spinal Association, a national 501(c)(3) non-profit membership organization formed in 1946 by paralyzed veterans and is dedicated 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 important 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. 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 people 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 demonstrations, the interactive assistive technology pavilion, the dynamic workshops and the thousands of products and services on display…this is a must-attend for everyone in the Community.”

The Latest Products and Services

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

7

Do you have questions? We have answers.

NSCIA FORUMS Discussion 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

Visit www.spinalcord.org/forum/ people with wide ranges of physical, sensory and developmental disabilities. This pavilion is anchored by the Texas Technology Access Program from the University of Texas at Austin, who is sponsoring an Interactive Demo Lab. This lab will not only feature an array of breakthrough assistive technologies, it will allow Expo visitors to experience them hands-on.

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 adaptive sports, canine assistance demos, chair yoga, face painting and an Artist Market showcasing the works of local artists with disabilities.

Relevant Workshops

Fans will also have the chance to meet folks like Jesse Billauer, extraordinary wheelchair athlete and founder of Life Rolls On, an organization 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 despite paralysis.

A series of compelling workshops which address 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.

Celebrity Encounters

Super X Fun Course, Comedy, Dancing and Abilities Expo also held shows in Los Angeles, More! Greater New York and Chicagoland. If you 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.

missed it this year, visit the show web site to get early access to the 2011 schedule by signing up for Buzz emails. For more information, schedules and directions, visit www.abilitiesexpo.com.


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Vol. 7, No. 4

Adventist Rehab Sends Experts to Haiti By Anne H. Moorer

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n 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 Portau-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 Haitian native and hospital Admissions Supervisor, Matchelle Bristol, Rehab Therapy Manager Andra Henning, Nursing Therapy Manager Kathy Inglefield, Registered Nurse Parveen Peter and her Radiology Technician husband, Robin, Certified Occupational 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 paraplegics 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 support system is vital to success, this posed a difficult challenge for the team. “It was very painful,” says Bristol, who

health

Release Your PotentialSM: Taking Control of Severe Spasticity

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hen the part of the brain that controls 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 voluntarily 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 Association (NSCIA) is partnering with Medtronic and other patient advocacy groups includ-

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 sessions so that they could offer one another support. The patients enthusiastically responded by helping each other learn exercises and transfers while encouraging one another emotionally as they progressed. While some were able to get wheelchairs, 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 rehabilitation. It also became clear that educating patients 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 families 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” after he designed and had built a set of ading 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 patients to seek treatment. You can attend a Release Your PotentialSM seminar to learn about treatment options for severe spasticity. If there’s not an upcoming event nearby, you can watch the webcast of an event, right on your computer screen. Or register for an upcoming teleconference and participate 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.ReleaseYourPotential.com. There is no charge to attend these events or watch the webcast. 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 other SCI/D issues, visit www.spinalcordcentral. org or call 800-962-9629.

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 mission is to serve the poor and unwanted in Haiti. Administrators became aware that those with spinal cord injuries were an often 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 accessible.” In all, five patients were transported by helicopter to St. Boniface, all paraplegic. Deciding which patients would go was heart

wrenching for the team, but Dr. Sheehan sees this as an opportunity for partnership development. Project Medishare, the organization 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 hopeful 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 relationship with them so that these patients get the treatment they deserve.” Anne H. Moorer is the marketing coordinator 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. 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.


Vol. 7, No. 4

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Vol. 7, No. 4

neurotechnology series

Pressure Sores By Jennifer French, Neurotech Network

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e all know it. The prevention techniques were taught in rehab; do pressure 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 without 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 conventional prevention techniques like pressure releases, 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 hyperbaric oxygen therapy. In the neurotechnology arena, electrical stimulation has been studied not only for treatment but also for prevention. 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 Prevention

Electrical 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 treatment of a pressure ulcer, electrical stimulation may not be effective due to potentially altered anatomy of the treatment area. An electrical stimulation regime may be combined with other methods of pressure sore prevention such as frequent position changes, mattresses and cushions to effectively distribute 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 applications to combat misuse atrophy and build muscle bulk are commercially available, 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 Paralyzed 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 longterm changes such as gluteal muscle thickness increased by 50% and significant increases in tissue oxygen levels. These findings suggest that an implantable system may have potential for pressure sore prevention, particularly for individuals who lack sensation or who are physically unable to perform regular 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 Wound

Alternative therapies such as ultrasound, ultraviolet light, superficial heating, pulsed electromagnetic fields and electrical stimulation 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 published by Dr. Luther Kloth of Marquette

Tornado

University explains the basis of using electrical stimulation for the treatment of chronic wounds. “The treatment goal for electrical stimulation is to attract negatively or positively charged cells into the wound area, such as neutrophins, macrophages, epidermal 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 significantly increase the healing rate and be effective in a large number of cases. Several studies seek to prove the effectiveness 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. However, the success of electrical stimulation is not for every wound. It is dependent on diagnosis, 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 preventions. There are also commercially available “electronic bandages.” There is an FDA approved device called Procellera, which produces 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

{} RESOURCES

Neurotech Network www.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 Network www.neurotechnetwork.org/educate_exercise.htm Procellera by Vomaris Innovations www.procellera.com POSiFECT by Biofisica www.biofisica.com/index.php/pg/1

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

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 developed by the Cleveland FES Center. She is the co-founder of Neurotech Network, a non-profit organization focusing on education and information dissemination about neurotechnology for persons with impairments. Their website provides many resources for free, including education pages and an internet based searchable database of neurotechnology devices.

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Vol. 7, No. 4

Get Covered. Get in the Game. New Initiative Promotes Enrollment of Eligible Children in Medicaid and CHIP through School and Community Sports Activities

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he U.S. Department of Health and Human Services (HHS) is launching the Get Covered. Get in the Game. initiative in seven pilot states across the country – Colorado, Florida, Maryland, New York, Oregon, Ohio and Wisconsin. The initiative is part of the Connecting Kids to Coverage 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 setting to find and enroll roughly five million uninsured children in the U.S. who are currently eligible for Medicaid and the Children’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 communities 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 million boys and girls participate in organized youth sports. Uninsured kids often miss out because they cannot afford the necessary 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 favorite sports and other activities that get them moving because they lack health insurance coverage. With Medicaid and CHIP, eligible 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 ensure that children are linked to vital health benefits. CMS will support events launching this initiative, outreach to news outlets across the pilot states, coaches’ trainings, and the placement of promotional materials at select youth sports events to help direct families to enrollment assistance. For more information about enrolling in children’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 available on this site.

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Vol. 7, No. 4

hospital member Cardinal 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

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f the 420 counties that comprise Appalachia, those located in eastern Kentucky are among the poorest. Approximately 80% of these Kentucky counties have a shortage of designated health professionals and healthcare resources to address life changing injuries/illnesses. This shortage 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, members of communities in which they live, advocates, educators, and researchers who investigate these impairments. The goal of the network is to identify, develop and disseminate information and strategies, and maximize resources to improve health outcomes and quality of life for individuals with SCI living in rural Kentucky Appalachian counties. 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 Cardinal Hill come from Appalachian Kentucky. Initial funding for KARRN was through a research grant by the Experimental Program to Stimulate Competitive Research (EPSCoR; funded through the National Science Foundation). The initial study examined 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 supports to healthcare in rural KY. These included the lack of and need for connection In addition to our nearly 25,000 individual members, NSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people with spinal cord injury and disorders. For information on Hospital Membership, contact Bill Fertig at bfresource@spinalcord.org or 800962- 9629. See a full listing of NSCIA Hospital Members in this issue, or go to www.spinalcord.org.

among those with SCI living in the community, issues related to limited personal and systemic resources, a need for increased specialized SCI knowledge among rural health care providers, and a need for greater advocacy for and among this population. From the groups that participated in the initial study, as well as other interested people, a network was developed that formally met and conducted an assessment of available 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 assets/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 asset mapping meeting were used to develop short-term and long-term goals for the group. Short term goals include developing 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 missing. Longer term goals include developing a foundation for future educational programs and research projects for KARRN, advocacy, 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 conference 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 Whiteneck from Craig Hospital in Denver, CO presented. 2) Importance of Exercise and Nutrition following SCI. Dr. David Gater Jr. from Richmond VAMC & Virginia Commonwealth University presented. 3) Long-term Healthcare Issues for Individuals 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 Hospital presented. 5) Developing a Peer-mentor Support System. Ms. Inger Ljungberg from the National Rehabilitation Hospital in Washington, D.C. presented.

13

6) Additional local partners in vocational rehabilitation specific to KY also presented. 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 development and growth of the network as well as its effectiveness to influence the healthcare in Eastern KY. A second KARRN SCI conference has been scheduled for October, 2010. Cardinal Hill Rehabilitation Hospital looks forward to the continued collaboration 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 Appalachian 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 Rehabilitation Hospital.

About the Authors

Beth Hunter, PhD, OTR/L is the Director of Research at Cardinal Hill Rehabilitation Hospital. Her research is aimed at access to care and quality of life among people with disabilities who live in rural communities. She is the Assistant Director of KARRN Patrick Kitzman, PhD, MSPT is an Associate Professor in the Department of Rehabilitation Sciences at the University of Kentucky. His research is aimed in improving the long-term healthcare outcomes for persons with neurological impairments living in rural communities. Michelle Graybeal, PT, MBA is the Program 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…

…building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being. …raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association. …growing our membership. The Membership Committee works with the VP of Membership to promote the growth and 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.

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.


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Vol. 7, No. 4

community outreach

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

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ASHINGTON - The National Oceanic and Atmospheric Administration (NOAA) National Weather Service latest forecast for the 2010 Atlantic 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 local partners to ensure they’re ready should a hurricane make landfall,” said FEMA Administrator Craig Fugate. “But we can only be as prepared as the public, so it’s important 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 forecasts and local emergency plans. You can’t control when a hurricane or other emergency may happen, but you can make sure you’re ready.”

The 2010 Atlantic hurricane season officially began June 1 and runs through November 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 National Weather Service forecast released today predicted, with 70 percent probability: • 14 to 20 Named Storms (top winds of 39 mph or higher), including: • 8 to 12 Hurricanes (top winds of 74 mph or higher), of which: • 4 to 6 could be Major Hurricanes (Category 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 resources necessary to prepare for and respond to a tropical storm or hurricane. Coordination and planning this season has involved consideration 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 batteries, medicines, non-perishable food, handoperated 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.

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DISABILITY SPECIFIC PREPAREDNESS RESOURCES Emergency preparedness is the preparation and planning necessary to effectively handle an emergency. It involves individuals developing 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 personalized emergency preparedness plan. When creating your personal preparedness plan, it is vital to identify the following: 1. 2. 3. 4. 5.

Responsible party for carrying out specific actions; Personnel, equipment, supplies, medications and needs specific to an individual; Emergency contact information; Other resources available for use in the emergency; and 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 chairs 2. Lifting of wheelchair with or without user 3. What parts of the wheelchair are safe to use in lifting 4. Evacuation on stairwells 5. Weight considerations 6. 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 additional 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.

For more information on individual and family preparedness, visit www.Ready.gov.

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

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

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.


Vol. 7, No. 4

15

research

Researchers Use Sniffing to Control Wheelchairs and Computers for the Severely Disabled By Smitha Raghunathan, (with permission from Voice of America)

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esearchers in Israel have developed an electronic controller that allows severely disabled people to control their wheelchairs or computers with a simple sniff of the nose. Injury or disease can leave people paralyzed 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 away

Quadriplegia can leave individuals without the use of their limbs or torso, but the degree 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 communication 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 technology presents new opportunities. Noam Sobel is a professor at the Department of Neurobiology at the Weizmann Institute of Science in Israel, where this technology was developed. His lab discovered that people can actually sniff very fast and very accurately, producing a very rich signal.

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

Price is right

Controllers activated by eye movements are currently the best communication option for “trapped-in” individuals, but Sobel’s sniff technology offers an alternative. With the use of a special mask, trappedin 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 technology is mass-produced, it could be made for only tens of dollars.

Immediate impact

Eric Larson of the National Spinal Cord Injury Association works with researchers to help them understand the needs of individuals with spinal cord injuries. He says that work like Sobel’s is exciting 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 opportunities 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 quadriplegics and others living with severe disabilities might be just a sniff away.

Sniff control

“It contains digital information. You have sniff onset and sniff offset, and you can sniff in and out. And it also contains analog 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 paralyzed 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

Related Information and Resources

‘Sniff control’ for power wheelchair control or computer applications may offer additional 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 partial 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 800962-9629 8:30 – 5:00 M-F, except federal holidays.

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

An Online Magazine @ www.specialiving.com A quarterly magazine for mobility challenged people who want to live easier and better e-mail: gareeb@aol.com P.O. Box 1000, Bloomington, IL 61702 www.Specialiving.com

Focuses on • Travel • Products • Accessibility • Health • Inspiration • People • Relationships I am glad to know your wonderful magazine will be available online. It will be much easier for me. Sue Krznarich, e-mail “ I love SpeciaLiving — absolutely love it.” Marilyn Berg, Beverly Hills, Florida


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September/October 2007 Vol. 7, No. 4 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 secondBecome to a Member Today. ary endpoints assess efficacy, such as improved neuromuscular control or sensation in the trunk or lower extremities. Once safety in this patient population has been established, Geron plans to seek FDA apJOIN OUR GROWING NATIONAL FORCE proval to extend study to increase the FORthe CHANGE dose of GRNOPC1, enroll subjects with complete cervical injuries and expand the trial to include patients with severe incomplete (ASIA PhoneImpairment 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 appropriate. Geron has selected up to seven U.S. medical centers as candidates to participate FREE! FREE! in this study and in planned protocol exFREE! tensions. The sites will be identified as they Us ready to enroll subcome onlineContact and are jects into the study.

Geron to Proceed SPINAL ... THE NATIONAL CORD INJURY ASSOCIATION Continued 1 Association (NSCIA) is a The Nationalfrom Spinal page Cord Injury

non-profit membership organization forconfirmatory people with spinal completed an additional cord injuries, diseases and dysfunction, their families, their repreclinical animal study to test the new lated service providers, policy makers, organizations, hospitals markers assays, subsequently suband othersand interested in the and issues affecting the spinal cord injury community. Ourto mission to enable spinal mitted a request the isFDA forpeople the with clinical cord injuries, diseases and dysfunction to achieve their highest hold be lifted. health and personal fulfillment by prolevel to of independence, viding resources, services and peer support. GRNOPC1, Geron’s lead hESC-based therapeutic candidate, contains hESCName derived oligodendrocyte progenitor cells thatStreet have demonstrated remyelinating and nerve stimulating properties leadCity,growth State, Zip ing to restoration of function in animal important, if available) E-mail models of(very acute spinal cord injury (Journal of Neuroscience, Vol. 25, 2005). “The neurosurgical community is ready Pleasethe check membership to begin clinical testing oftype: this new approach to treating devastating spinal cord ■ Individual with SCI/D injury,” said member Richard of Fessler, M.D., Ph.D., ■ Family friend professor of neurological surgery the ■ Individual service or health care at provider ■ Organizational Feinberg School of Medicine at Northwestern University. “We know that demyelination is central to the pathology of the injury, and its reversal by means of injecting■oligodendrocyte Check Enclosed progenitor cells would Credit Card (Visa, Mastercard, Exp. be ■ revolutionary for the field. IfAmer. found to) be safe and effective, the therapy would Name on card treatment option for thouprovide a viable Credit Card # sands of patients who suffer severe spinal Expiration cord injuriesDate each year.”

My donation is $

The GRNOPC1NSCIA ClinicalMember Program Services

Patients eligible the Phase I trial must SCILife, HDIfor Publishers, PO Box 131401, Houston, TX 77219-1401 have documented evidence of functionally Phone (713) 526-6900 complete spinal cord injury with a neurological level of T3 to T10 spinal segments

It’s Free!

Other Potential Neurological Indications I am interested in supporting for GRNOPC1

NSCIA with: In addition to spinal cord injury, GRNOPC1 may have therapeutic utility ■ Gifts of stocks or mutual funds for other central nervous system indica■ Gifts has of real estate tions. Geron established a number of collaborations withNSCIA academic groups to test ■ Including in my will GRNOPC1 in selected animal models of human disease for which there is a strong Toll free (800) 962-9629 rationale for the approach. Fax (713) 526-7787 e-mail: membership@spinalcord.org Alzheimer’s Disease: Alzheimer’s disease web site: www.spinalcord.org is a progressive, fatal, degenerative disorcut out & return der that attacks✂ the neurons in the brain,

Background on GRNOPC1 Join Us at NSCIA’s 3rd Annual Spinal Cord Injury (SCI) Hall of Fame Gala

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 SCIA celebrate 14with new inductees disease in will collaboration Professor emerging leaderofatthe theInstitute 3rd anFrankand M.an LaFerla, Director nual Spinal Cord Injury (SCI) Hall of for Memory Impairments and NeurologiFame gala and induction ceremony on the cal Disorders (UCI MIND) at the Univerevening of Tuesday, Nov. 6, at the John F. sity of California, Irvine. Kennedy Center for the Performing in Multiple Sclerosis (MS): MS is anArts autoWashington, D.C. in causes recognition of the acimmune disease that demyelination complishments withspinal SCI cord and of nerve axons inofthepeople brain and those committed to their quality of life. often progressing to physical and cognitive Once There again,isNSCIA will host cure to a disability. currently nobe known performance on the Millennium Stage, folfor the disease. According to the National lowed by the 2007 induction ceremony and Multiple Sclerosis Society there are about a dessertpeople reception in United the Roof Terrace 400,000 in the States with Restaurant. Nashville based singer/songMS. GRNOPC1 is being tested in a nonwriter JPprimate Williams will perform the Milhuman model of MS inoncollaboralennium Stage, and award-winning tion with Professor Jeffery D. Kocsis of the journalist, Leon Harris will emcee the event. Departments of Neurology and NeurobiolHosted last year by inaugural SCI Hall ogy at Yale University School of Medicine of Fame member and former Dateline and the Department of Veterans Affairs. NBC correspondent John Hockenberry, Canavan Disease: Canavan disease is a this black tie optional celebration is atfatal neurological disorder that belongs to tended by business professionals, governa group of genetic disorders called leukoment officials from a variety of departments dystrophies, characterized by the abnormal including the U.S. Departments of Health development or degeneration of myelin. and Human Services, Labor, Justice, EduSymptoms of Canavan disease present in cation, Housing and Urban Development the months of lifeand and Veterans death usually andfirst thesix Social Security Adoccurs at 3 – 10 years of age. GRNOPC1 ministrations, healthcare providers, mediais being tested in aresearchers, rodent model of Canavan representatives, individuals, and disease witha Dr. Paola Lefamiliesin– collaboration all of whom share commitment one, Director of Cell of and Therto maximizing thethe quality lifeGene for people apy Center, at the University of Medicine with spinal cord injury and disease. and Dentistry of New Jersey.

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

About Geron

This categories include Assistive Geron is year’s developing first-in-class biopharTechnology, Benefactor, Corporate Execumaceuticals for the treatment of cancer and tive, Disability Activist, Disability Educator, chronic degenerative diseases, including Entertainment, Entrepreneur, spinal cord injury, heart failureGovernment and diabeExecutive, Grassroots Organizer,anLegislative, tes. The company is advancing anti-canMedia, in Basicvaccine Science, Research cer drugResearch and a cancer that target in Quality Life, and Sports. In addition, the enzymeoftelomerase through multiple NSCIAtrials will award an “Emerging clinical in different cancers.Leader,” For morea special award visit whichwww.geron.com. was introduced last year information, in conjunction with the SCIforwardHall of This news release may2006 contain Fame. looking statements made pursuant to the process began of in the August when “safeThe harbor” provisions Private SeNSCIALitigation called for nominations. exceedcurities Reform Act ofFar 1995. Ining lastareyear’s nominations by almost 50 vestors cautioned that statements in this stellarrelease nominees, NSCIA has received more press regarding potential applications than 165 qualified nominees!stem These of Geron’s human embryonic cellnomitechnees were voted onforward-looking by NSCIA members nology constitute statements that involve risks and committee uncertainties, and reviewed by a selection to including, withoutOne limitation, risks inherent ratify the voting. nominee from each in the development and commercialization category will be inducted and celebrated at of thepotential gala. products, uncertainty of clinical trial Formed results orbyregulatory approvals or clearNSCIA in 2005, the SCI ances, future capital, dependence Hall ofneed Fameforwas created to celebrate and upon and organizations protection of that our honorcollaborators individuals and intellectual property contributions rights. Actualtoresults have made significant qualmay materially from thetoward resultsa anticiity ofdiffer life and advancements better pated in these forward-looking statements. future for all individuals with spinal cord inAdditional information on potential factors jury and disease. that To could our results andSCI other risks findaffect out more about the Hall of and areofdetailed time or to Fameuncertainties or to see a list previousfrom inductees time Geron’s nominees, periodic reports, this in year’s visitincluding www. the quarterly report on Form 10-Q for the spinalcord.org. quarter ended March 31, 2010.

Who’s Who in American Law 1985 through present

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one vehicle accident and you are the driver, ladder, trampoline

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Vol. 7, No. 4

legal

Deciding to Join a Clinical Trial: Your Rights and Priorities By Len Zandrow, NSCIA General Counsel

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t any given time, there are dozens of ongoing 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 important 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 protocol or plan which specifies the length of the study, what types of persons may participate, and the schedule of tests, treatments, and procedures. Eligibility criteria for SCI research studies may include factors like age, gender, extent and duration of injury, previous treatment 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.

Expected benefits need to be weighed against potential risks. Assuming that the research study is well designed and implemented, 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 facilities 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 involve substantial risks. There may be painful, serious, or even life-threatening side affects to medical experiments. Adverse side affects may be both immediate and longterm and may not be fully known at the time of participation. Participation may also be burdensome, possibly involving a substantial amount of time and effort for treatments 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 pharmaceutical industry, or Federal agencies such as the NIH, and are governed by comprehensive 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 protocol 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 consent 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 information that the physician possesses — or reasonably should possess — that is material to an intelligent decision whether to participate in the study. It might be helpful for a family member or friend to participate in this meeting for support and possible follow-up questions. Suggested lines of inquiry include: • Purpose and duration of the study • Eligibility criteria • Details regarding the medical procedures involved • Likely benefits and risks, and possible impacts on daily living • Physician who is primarily responsible • Location where treatments will be performed • Prior results of comparable studies • Person or entity paying for the treatments

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• W hether 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 results The study’s clinical team will be composed 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 participating 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 disclosed 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 conflict 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 inform the research team and offer his or her reasons for leaving the study. Participating in a research study can offer profound benefits to an individual with SCI, and to the disability community at large. When carefully conceived and performed, 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.


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Vol. 7, No. 4

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

GEORGIA SUPPORT GROUPS Columbus SCI Support Group Phone: (703) 322-9039 Contact: Ramona Cost E-mail: rvcost@mchsi.com

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

Central Central GA Rehab Hospital 3351 Northside Dr., Macon, Georgia, 31210 Phone: (800) 491-3550 Ext. 643 Fax: (478) 477-6223 Contact: Kathy Combs

Grupo de apoyo en Español Gentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012 Contact: Diane Prescott Support Group Phone: (623) 209-0311 Contact: Gary Hershey SCI Women Support Group Banner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307 Contact: Jill Greenlee, CTRS CALIFORNIA CHAPTER WYNGS, NSCIA 7900 Nelson Rd., Panorama City, California, 91402 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano Website: www.wyngs.org E-mail: wyngs4sci@msn.com SUPPORT GROUPS Southern California SCI Support Group Casa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031 Fax: (818) 267-3095 Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 06492 Phone: (203) 284-1045 Contact: Jeff Dion Website: www.sciact.org E-mail: nscia@sciact.org DISTRICT OF COLUMBIA CHAPTER SCI Network of Metropolitan Washington, NSCIA Attn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904 Phone: (240) 429-6141 Contact: Kimball Gray E-mail: kimballg@ecnv.org FLORIDA SUPPORT GROUPS Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: scidconsultant@hotmail.com Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: ellen.lyons-olski@healthsouth.com Capital Rehabilitation Hospital 1675 Riggins Rd., Tallahassee, Florida, 32308 Phone: (850) 656-4800 Contact: JoAnna Rodgers-Green Florida Rehab. and Sports Medicine 5165 Adanson St., Orlando, Florida, 32804 Phone: (407) 823-2967 Contact: Robin Kohn Email: rkohn@mail.ucf.edu Phone : (407) 623-1070 Contact: Carl Miller HEALTHSOUTH - Support Group 90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866 Contact Vicki Yasova Tampa General Hospital SCI Support Group 2 Columbia Dr., Tampa, Florida, 33601 Phone: (800) 995-8544

ILLINOIS CHAPTER Spinal Cord Injury Association of Illinois 1032 South LaGrange Road, LaGrange, Illinois, 60525 Phone: (708) 352-6223 Fax: (708) 352-9065 Contact: Mercedes Rauen Website: www.sci-illinois.org E-mail: SCIInjury@aol.com INDIANA SUPPORT GROUPS Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us

Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website: sciboston.com/support.htm Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: sciboston.com/support.htm MICHIGAN CHAPTER MSCIA 1938 Woodslee Drive, Troy, Michigan 48083 Phone: (248) 288-2270 Contact: Stacey Murphy E-mail: smurphy@americaremedical.com MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: www.lifeofms.com Email: mbahret@yahoo.com

Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: heyjoewhite@comcast.net

MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com

IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Dr, Urbandale, Iowa 50322 Phone: (515) 554-9759 Contact: Angie Plager Website: www.spinalcordiowa.org Email: SCIAofIowa@hotmail.com

SUPPORT GROUP Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: www.swcil.org E-mail: mtrimble@swcil.org

KANSAS CHAPTERS Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: Linda.Klaiber@healthsouth.com

NEW HAMPSHIRE CHAPTER New Hampshire Chapter, NSCIA 21 Chenell Drive, Concord, NH 03053 Phone: (603) 216-3920 Fax: (603) 432-1549 Contact: Debbie Krider E-mail: debbie@gsil.org Website: www.nhspinal.org

KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 588-8574 Contact: David Allgood, President Website: www.derbycityspinalcord.org E-mail: david.allgood@amerihealthmercy.org SUPPORT GROUP Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: whelygurl@yahoo.com MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: www.kernan.org/kernan/ MASSACHUSETTS CHAPTER Greater Boston Chapter, NSCIA New England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801 Phone: (781) 933-8666 Fax: (781) 933-0043 Contact: Kevin Gibson Website: www.sciboston.com E-mail: sciboston@aol.com SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (781) 933-8666 Website: www.sciboston.com/support.htm Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (617) 573-2081 Website: sciboston.com/support.htm

NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: rochesternscia@yahoo.com Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: ascaramu@frontiernet.net New York City Chapter, NSCIA Mt. Sinai Dept of Rehab Medicine Attn: James Cesario 1 Gustave L. Levy Place, Box 1240 New York, New York, 10029 Phone: (212) 659-9369 Fax: (212) 348-5901 Contact: James Cesario or John Moynihan Website: www.nycspinal.org E-mail: NYCspinal@NYCspinal.org SUPPORT GROUPS SCI Network of Central New York ARISE, 635 James Street, Syracuse, New York, 13203 Phone: (315) 464-2337 Fax: (315) 464-2305 Contact: Tammy Bartoszek E-mail: bartoszt@upstate.edu Phone: (315) 247-0927 Contact: Maria Froio E-mail: scin4cny@yahoo.com Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: www.testaverdefund.org E-mail: info@testaverdefund.org NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609 Phone: (919) 350-4172 Contact: Deborah Myers E-mail: dmyers8@triad.rr.com Contact: Karen Vasquez E-mail: kvasquez@wakemed.org

OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd Swanton, Ohio 43558 Phone: (419) 875-4029 Contact: Hank Burney, President Website: www.nwonscia.org E-mail: bjbiii77@windstream.net Phone: (419) 531-6401 Contact: Becky Gay E-mail: beckkevn1@aol.com Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd Swanton, Ohio 43558 Phone: (419) 875-4029 Contact: Zena Cole, President Website: www.nwonscia.org E-mail: Ogie101@aol.com Phone: (419) 531-6401 Contact: Becky Gay E-mail: beckkevn1@aol.com SUPPORT GROUP Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: rlebron@forumhealth.org Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: bird196@aol.com PENNSYLVANIA SUPPORT GROUPS Rehabilitation Hospital of Altoona 2005 Valley View Blvd., Altoona, Pennsylvania, 16602 Phone: (800) 873-4220 Greater Pittsburgh Rehabilitation Hospital 2380 McGinley Rd., Monroeville, Pennsylvania, 15146 Phone: (800) 695-4774 Contact: Kristy Nauman E-mail: kristy.nauman@healthsouth.com Delaware Valley SCIA 2610 Belmont Ave., Philadelphia, Pennsylvania, 19131 Phone: (215) 477-4946 Contact: Bruce McElrath Magee Rehabilitation SCI Resource & Support Group 6 Franklin Plaza, Philadelphia, Pennsylvania, 19102 Phone: (215) 587-3174 Fax: (215) 568-3736 Contact: Marie Protesto Website: www.mageepeers.org Rehabilitation Hospital of York 1850 Normandie Dr., York, Pennsylvania, 17404 Phone: (800) 752-9675 Ext. 720 Phone: (717) 767-6941 Contact: Tammy Derk E-mail: tammy.derk@healthsouth.com SOUTH CAROLINA CHAPTER SCSCIA 2935 Colonial Drive, Columbia, SC 29203 Phone: (866) 445-5509 (toll free) Phone: (803) 252-2198 Contact: Diane Epperly, Executive Director E-mail: scscia@att.net Contact: Rafe Ellisor, Chairman E-mail: rafe.ellisor@healthsouth.com Website: www.scspinalcord.org

Orangeburg, SC Area SCI Support Group 627 Flatwoods Road, Bowman, SC 29018 Phone: (803) 829-2043 Contact: Rebecca Felder E-mail: Rebecca.felder@yahoo.com Spartanburg, SC Area SCI Support Group 101 St. Matthews Lane, Spartanburg, South Carolina, 29301 Phone: (864) 595-1947 Contact: Dot Colson E-mail: DColson@Dennys.com York/Rock Hill Area SCI Support Group Phone: (803) 366-5659 222 S. Herlong Avenue, Rock Hill, SC 29732 Contact: Bob Alders E-mail: bobcatawba@comporium.net TENNESSEE CHAPTER Tennessee Spinal Cord Injury Association (TSCIA) 105 Ballentrae Drive, Hendersonville, TN 37075 Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: cherlystowe@yahoo.com Website: www.standuptn.com TEXAS CHAPTER Rio Grande Chapter Highlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936 Phone: (915) 298-7241 Fax: (915) 298-7298 Contact: Sukie Armendariz Contact: Ron Prieto E-mail: riograndenscia@aol.com VIRGINIA CHAPTER Spinal Cord Injury Association of Virginia P.O. Box 8326 Richmond, VA. 23226 Phone: (804)726-4990 Fax: (888) 752-7857 Contact: Steve Fetrow Email: steve.fetrow@sciava.org Website: www.sciava.org WASHINGTON SUPPORT GROUP SCI Forum University of Washington Medical Center Cafeteria Conference Room B/C 1959 NE Pacific St, Seattle, Washington 98195 Phone: (206) 685-3999 Contact: Cynthia Salzman E-mail: Csalzman@u.washington.edu WEST VIRGINIA SUPPORT GROUP West Virginia Mountaineer Support Group P.O. Box 1004, Institute, West Virginia, 25112 Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us

Florence, SC Area SCI Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail: ronnnie1mc@yahoo.com

WISCONSIN CHAPTER NSCIA Southeastern Wisconsin 1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215 Phone: (414) 384-4022 Fax: (414) 384-7820 Contact: NSCIA-SWC Office E-mail: office@spinalcordwi.org Contact: John Dziewa E-mail: president@spinalcordwi.org Website: www.spinalcordwi.org

Greenville Area SCI Support Group 190 McCall Road, Honea Path, South Carolina, 29654 Phone: (864) 369-2791 Contact: Byron Armentrout E-mail: wheelin19@aol.com

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

SUPPORT GROUPS Chester Area SCI Support Group Purity Presbyterian Church on 135 Wylie Street, Chester, South Carolina, Phone: (803) 385-2270 Contact: Bill McDonough E-mail: leftwich@sccoast.net

North Charleston Area SCI Support Group 172 Bayboro Circle, Goose Creek, South Carolina, 29445 Phone: (843) 863-1165 Contact: Ruth Jones Phone: (843) 792-2605 Contact: Richard Aust E-mail: aust@musc.edu

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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SCILIFE, Volume 7, Issue 4