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Vol. 7, No. 2


Vol. 7, No. 2

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

Paralympics – More than the Symbols By Andy Hicks


ore than a few folks were a bit upset when it seemed that no sooner than the recent Olympics came to an end, the signs and visible symbols of the games began to come down. But those were soon replaced by the red, blue and green symbol of the Paralympics and the streets soon had banners showing dynamic images of sledge hockey, sit skiing, and other sports, all promoting the Paralympics through the city. The Globe and Mail, the National Canadian paper, said, “Paralympics are Proving a Surprising Hit”. Many of the events were already sold out.

The paper said, “What we find is that once people get into an event, they enjoy the spirit of it all, and those who go find themselves absolutely blown away by the athletes they see.” The Paralympics opening ceremony did not disappoint anyone. The 2.5 hour program was spectacular, amazing, emotional and most of all, inspiring. This was not a rehash of the Olympic Ceremonies or a sympathy party as some always fear, but an energized tribute to extraordinary people who are determined to achieve great things. It started out expectedly, with the music and ceremony, until about 20 minutes into the program Luca Patuelli, aka, LAZYLEGZ came out to center stage. The center round platform rose and he did a handstand up straight above his crutches then dropped down onto the stage break dancing with six other break dancers. See YouTube, Lazylegs disabled break dancing. I knew then that this was not going to be what I expected. There was a heavy metal, upper and lower amputee singer who came out on stage on a motorcycle with about 30 people in rugby chairs, hand cycles, and racing chairs with lights attached, in semidarkness. There was also, half

Photo courtesy of Mary Carol Peterson.

pipe skate boarding, with w/c skate boarding and Aaron Fotheringham was there to do his famous back flip. On a more serious note, the four Canadian soldiers that raised the Paralympic flag had amputations from


Internet Resources about Medicare Fraud and Abuse

OIG WEBSITE The Department of Health & Human Services (HHS) Office of Inspector General (OIG) website ( offers a

Continued on page 13

• Exclusion information; • The National Practitioner Data Bank and the Healthcare Integrity and Protection Data Bank, which are limited-access databases that contain information on various licensure, malpractice, and legal actions taken against physicians and dentists and, in some cases, other health care providers; • A free e-mail “listserv” that informs subscribers of new additions to the OIG’s website. For more information visit www. on the Internet.

Medicare Fraud & Abuse Resource Reference hile most health care providers, suppliers, and practitioners are honest, a small minority commit health care fraud and abuse that costs the Medicare Program a lot of money every year. The Centers for Medicare & Medicaid Services (CMS) works with other government agencies and law enforcement organizations to protect the Medicare Program from fraud and abuse. This Resource Reference directs you to a number of sources of information pertaining to Medicare fraud and abuse and helps you understand what to do if you suspect or become aware of incidents of potential Medicare fraud or abuse.

the Afghanistan war, where many Canadians have been killed and wounded, so this had great significance to many in the crowd. Just before the athletes arrived hundreds

wealth of information regarding fraud and abuse prevention, detection, and reporting. For example, the OIG’s website includes links to: • Fraud alerts, bulletins, and other guidance that alert the public and providers about fraudulent and abusive schemes; • Model compliance programs for a wide array of health care providers and suppliers;

• “Open Letters” to the health care provider community discussing major initiatives; • Voluntary self-disclosure protocols to disclose instances of improper billing; • Safe harbor provisions under the anti-kickback statute; • Advisory opinions on the application of the anti-kickback statute and other OIG fraud and abuse authorities;

CMS WEBSITE CMS’ website ( offers a vast amount of information pertaining to Medicare Program rules and requirements, including: • The Medicare Learning Network (MLN), which includes informative articles and training modules. For more information visit on the CMS website. • Part D prescription drug benefit compliance guidance; • Information on the physician self-referral prohibition; • Medicare coverage information and policies; • Information and guidance on billing and coding issues; Continued on page 8


Vol. 7, No. 2

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For more information, call 1-877-4-LOFRIC, or visit 1. Diokno AC, Mitchell BA, Nash AJ, Kimbrough JA. Patient satisfaction and the LoFric catheter for clean intermittent catheterization. J Urol. 1995;153(2):349-351. 2. Sutherland RS, Kogan BA, Baskin LS, Mevorach RA. Clean intermittent catheterization in boys using the LoFric catheter. J Urol. 1996;156:2041-2043. © 2008. 21535 Hawthorne Blvd., Ste. 525, Torrance, CA 90503. LoFric is a registered trademark of Astra Tech, a company in the AstraZeneca Group. US-0408

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Vol. 7, No. 2

chapter news Chapter Programs: Something for Everyone 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


BOARD OF DIRECTORS Executive Committee


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

By David Estrada, NSCIA Vice President for Chapters and Support Groups


SCIA has chapters and support groups throughout the United States. Chapters and support groups provide peer support and other services. They work with local and national officials and agencies to develop programs and services and act as community advocates for improved access, housing, transportation, employment, and leisure time activities for disabled people. These are fundamental aspects of living that an estimated 6 million American people with spinal cord injuries or diseases cope with. If you already belong to a Chapter of NSCIA, you might be interested in what

other local groups are doing. If you aren’t yet a member of a local Chapter – what are you waiting for? Here’s just a sample of what’s going on around the country.

Kansas City Chapter

The Greater Kansas City Spinal Cord Injury Association is busily getting ready for its joint fundraiser with the NSCIA, the Hospital Hill Run in Kansas City on June 5, 2010. They currently have almost 50 hand cyclists, runners or walkers and volunteers that are ready to help us with our cause. Hospital Hill Run is one of the most popular runs in the Kansas City area and is known for its tough course but is also touted as one of the most organized runs in the area. Our chapter aims to provide resources to individuals with SCI, as well as to professionals and family members and hopes to hold a disability expo in the Kansas City area in late 2010 or early 2011.

Iowa Chapter

The Iowa Chapter will join in the Sam Schmidt Day at the Races events. Sam Schmidt Paralysis Foundation hosts “Day at the Races.” Events all across the country and they are once again returning to Iowa, on either on Friday, June 18th or Saturday, June 19th, 2010 and will be in Newton at the Iowa Speedway. Attendees get to meet Sam Schmidt (owner of Sam Schmidt Motorsports and Indy Racing League team), watch the races for FREE, and have access to the pit and garage area to see all the cars, crews, and drivers! It is an awesome experi-


ence. More info can be found at

California Chapter

WYNGS once again helped jointly staff the NSCIA Abilities Expo booth, helping raise awareness of the organization and our issues.

Virginia Chapter

A 30-minute program done by a local county TV station last summer entitled “Understanding Spinal Cord Injuries” is now available online on our homepage: http:// As a fund raising event chapter president Steve Fetrow displayed a selection of photographs at the 6th annual Resources for Independent Living Juried Art Show in Richmond, VA and the Chapter is planning a fishing event to be held on June 5th with instruction provided by the Virginia Dept. of Game and Inland Fisheries.

Illinois Chapter

Spinal Cord Injury Association of Illinois Run for Those who Roll team will once again compete in the Bank of America Chicago Marathon to raise funds to assist the Chapter improve the lives of those with spinal cord injuries. Race day is October 10, 2010. We encourage you to contact the local NSCIA affiliate in your area, and become involved with them. If you cannot find a support group in your area, why not start your own? Contact NSCIA for assistance on our business line at (800) 962-9629.

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:, 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: or website:

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: SCILife © 2010

New Resources for Family Caregivers and Partners


SCIA is pleased to announce a partnership with the National Family Caregivers Association (NFCA) to provide with information, education, and support to help with the specific challenges as a family caregiver. NFCA is the nation’s only organization that reaches out to all family caregivers regardless of the age or diagnosis of the person for whom they provide care. NFCA president/co-founder and CEO, Suzanne Mintz, cares for her husband who is disabled due to multiple sclerosis (MS), and has been writing a family caregiver column for Paraplegic News for more than a dozen years. Through the new partnership program with NSCIA, individuals are eligible for a free membership in NFCA, which includes the following benefits: • A welcome packet consisting of a complete set of NFCA’s Education and Empowerment Pamphlet Series - 14 publications in all • A monthly E-Letter full of resources with links to news you can use • TAKE CARE! – a quarterly newsletter of how-to articles, caregiver stories, answers to your questions, and more • A toll free help line for accessing resources • - where you can: • Find the resources and help you need • Share your story and read others

• Gain valuable “How To” information that can make your life easier • Join an on-going discussion or start a new one • Stay informed about legislation affecting family caregivers

thought that there was a resource out there that understood how difficult caregiving can be. The only other site I found like this was one that dealt only with caregivers for the aged. Thank you for understanding even the young have problems.

Here is an example of what family caregivers have said about NFCA: I am very near tears as I write this. I am also in thankful shock that someone understands. I just want to say Thank You for being there, for understanding. I had just about (well, really I HAD given up) all

This is a pilot program made possible by a grant from the Medtronic Foundation. It will run through the end of 2010. To take advantage of this free program, just visit or contact Spinal Cord Central at or 800-962-9629.

Vol. 7, No. 2


from the executive director

Volunteer Service: What Are You Doing for Others? By K. Eric Larson, Executive Director and CEO, NSCIA


ife’s most urgent and persistent question is: what are you doing for others?” Dr. Martin Luther King once said. Never have I read or heard a more direct, or more personal, challenge and one that I would like to pass along to you. Vo l u n t e e r ing makes a difference. It can address se-

rious problems and bring people together to strengthen communities – including the community of American’s living with spinal cord injury and disease, along with caregivers, providers, families and friends. Susan J. Ellis, founder of Energize, Inc., ( says “People volunteer for a wide variety of reasons, especially wanting to help others. But it’s also OK to want some benefits for yourself from volunteering.” I agree! Volunteering is like any relationship – it has (at least) two sides, and both have to see the benefit. “Some people are uncomfortable with the notion that a volunteer “benefits” from doing volunteer work,” continues Ellis. “There is a long tradition of seeing volunteering as a form of charity, based on altruism and selflessness. The best volunteering does involve the desire to serve others, but this does not exclude other motivations, as well. Instead of considering volunteering as something you do for people who are not as fortunate as yourself, begin to think of it as an exchange.” To learn more about Ellis’s take on volunteering, visit and search for “Why Volunteer?” Volunteer service has been a part of NSCIA from day one. We were founded by volunteers. Much of our work has been,

and continues to be, done by volunteers. I started my relationship with NSCIA as a volunteer with our Illinois chapter more than 15 years ago, and those early volunteer contributions are what lead me to what I know will be a lifetime commitment to this community and our causes. And while I love my current role, nothing I’ve done professionally has had more impact than my volunteer service through NSCIA, and nothing has been more rewarding. 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 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 what you 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 and supporting 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. Volunteers are key to the success of many projects, and opportunities vary 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. Volunteer roles and time commitment can vary greatly, depending on the role and your availability. Some positions can take as little as 1-2 hours a week, others are limited only by your passion for making a difference. If you would like more information or to apply to serve as an NSCIA volunteer, please contact us at 800-962-9629 or

HOSPITAL MEMBERS OF NSCIA In addition to our more than 24,000 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. Visit 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 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









CAROLINAS REHABILITATION Charlotte, NC (704) 355-4300



WOODROW WILSON REHAB CENTER Fishersville, VA (800) 345-9972




FLORIDA SCI RESOURCE CENTER Tampa, FL (800) 995-8544 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. 2

from the president

How Can I Know a Diverse and Inclusive Company to Call My Own? By Patrick Maher, President, NSCIA Board of Directors


ith so many of us scrambling during this challenging period to find our next professional “home”, whether that ultimately leads to contracting, consulting or a permanent role, we might do well to really think about making our nest with a company or clients that appeal to our cultural needs. We talk about an organization’s culture, even its heart, but what do we mean by these terms? The diverse elements of an organization’s culture are more of a grocery list from my perspective, and each of us is shopping for some like items frequently, but commonly some items that might be unique for us as well. For me, one of the key elements or “sens-

legal Making a Claim for Benefits under a Disability Insurance Policy By Len Zandrow, NSCIA General Counsel


isability insurance policies provide supplemental income to persons who are unable to work because of injury or disease. These policies come in many varieties. Some are purchased directly by individuals, who then pay periodic premiums for coverage themselves. The rights created by these policies are private and are largely governed by contract law. Other disability policies are provided by employers and are funded, either completely or partially, as a work-related benefit. Often, employer-purchased policies are group plans. The rights created by these policies are typically controlled by a comprehensive Federal statute known as the Employee Income Retirement Security Act or ERISA. This article offers some practical advice for claimants with spinal cord injury or disease (SCI/D) pursuing benefits under either type of disability policy. Review your policy. The practical starting point in bringing any insurance claim is the policy language itself. Before

es” that I look for in a company’s culture is its commitment to diversity and inclusiveness. For purposes of this post, I’ll define diversity as the complex characteristics, traits and experiences that each of us has had and continue to collect as we engage one another. This happens to be a core aspect of the definition taken from a multi-national pharmaceutical from which I find great clarity. Examples of diversity might be cultural, racial, generational, familial, learning styles and academic background, industry experience, disability, sexual orientation, faith or spirituality, etc. When considering these as just a small grouping of possible grocery items, you’ll note that few if any - can be known through any superficial observation or brief interaction. That’s a very important point, and one that is brought to bear in the “Iceberg Principle” - commonly attributed to Ernest Hemingway to explain that most things cannot be understood in the superficial, but through introspection and exploration. Much of symbolism in writing is exemplary of the principle. He suggested that most writers don’t set out to write with their strategic plan on symbolism in place, but that it’s certainly worth considering the natural development of such in a work and

what they illuminate about more universal concepts. Inclusion is a bit more subtle and challenging to unearth before actually working for a company, but at its heart is the engagement of all employees for the unique qualities, perspectives and skills they bring to bear to strengthen the organization. This is what cultivates truly breakthrough thinking and products or services that distance great companies from all others. But I digress! All right - let’s get back to you and finding an optimal fit for your skills, learning and working style, passion, background expertise or at least experience and related in the context of finding companies that might well be engaging of candidates with disabilities - namely diverse and inclusive companies! How can you possibly KNOW that a company you court for an opportunity is truly diverse and inclusive? The short answer is you can’t KNOW. However, you can identify and piece together clues to the puzzle through many available sources. Here are a few, bulleted for simplicity; Sources to help consider a company’s Commitment to Diversity & Inclusion:

filing a claim, consult the applicable policy first. One might think that a person with SCI/D would have little difficulty establishing the existence of a disability and an entitlement to benefits. Unfortunately, that is not necessarily the case. Insurance policies contain a number of terms and conditions which adjusters may invoke to deny coverage if a claimant fails to comply. Some policies may exclude coverage for spinal cord disease on the basis that it was “pre-existing,” namely, that it constituted a condition for which medical treatment had been sought within a specified time (usually 12 months) before filing the claim. Other policies may deny benefits even if you are totally disabled from your usual occupation as long as there are other jobs that you are qualified to do. Act promptly. Most disability policies impose filing deadlines. Typically, these deadlines are strictly construed, despite how traumatic or distracting a new injury may be for the claimant. Copies of the policy itself and any necessary application forms should be obtained as soon as practically possible. Either the claimant or a trusted family member or friend should contact the insurance broker or agent from whom a personal or private policy was purchased. If the policy was instead bought by an employer, the human resources department should be contacted.

Gather and submit all related medical records. Any claim for disability benefits should be supported with the complete medical file regarding treatment. These records form the basis on which eligibility is determined and upon which an appeal would be reviewed, if necessary. Make certain that the attending physician recognizes the standards used for assessing the nature and extent of the disability involved and specifically addresses them when preparing any reports for the insurer. Strive for accuracy. Be as thorough and complete as possible in the application form. Failure to disclose certain medical information could be perceived as a lack of cooperation and could trigger a defense under the policy. Do not exaggerate any details or speculate about your prognosis. The insurer may refuse to pay if it discovers any arguable misrepresentations in the claim. Be aware of your appellate rights. Do not consider a denial of benefits as necessarily representing the “last word” on your claim. If your claim is denied, ask the insurer the precise reason(s) why and request a copy of any standards or guidelines used in making the decision. Check the appellate rights and deadlines specified in your policy. Many policies require claimants to first pursue an internal, administrative appeal with the insurer before bringing an action in court. The appellate procedures and remedies that may ultimately apply at common law or under ERISA are very different, and a discussion of these factors exceeds the scope of this article. It may be appropriate and beneficial to consult with an attorney at this stage, if you have not previously done so.

1. Clear and direct references to broad diversity commitment on company web site (look under About Us, Diversity search, In the Community, etc.). 2. Listing of Company on Diversity Inc. site at as top companies to work for (they feature a Top 10 and Top 50). 3. Tap your personal network and ask for


opinions. 4. Tap your business/social media network (LinkedIn, Facebook, Twitter, etc.). 5. Consider news items in print, online, local or national television related to human interest, corporate social responsibility, and related. 6. Find out if past colleagues, friends or family work or have worked in the recent past for the company and probe them on the topic from the trenches. 7. Find out if they support special interest groups (SIGs) or workshops on the topics. 8. Research their commitment to service in the community (service days as a group or individual staff, financial support of NFPs) The above are just a few research efforts that you can make to help peel away the layers of an organization before committing to submitting your resume, communicating with them on an open job requisition, or pursuing an arduous interview/ screening process to lower the water line of the “iceberg”, thereby enabling you to better know the culture and gain more insight on whether they might be more engaging and excited to add you as a candidate with a disability - if evident - or as a candidate that might disclose a disability and seek their support to optimize your value during your employment with the company. Happy research! is looking for experienced volunteers to moderate our on-line forum Please contact us at


Vol. 7, No. 2

About BOTOX®


Botox® Receives FDA Approval For Treatment of Upper Limb Spasticity in Adults


llergan, Inc., Irvine, CA, announced on March 9, that the United States Food and Drug Administration (FDA) has approved BOTOX® (onabotulinumtoxinA) for the treatment of increased muscle stiffness in the elbow, wrist and fingers in adults with upper limb spasticity. Spasticity is a debilitating condition impacting approximately one million Americans, many of whom suffer from spasticity in the upper limbs following a stroke. Upper limb spasticity may also occur following a spinal cord or traumatic brain injury or in patients affected by multiple sclerosis or adults with a history of cerebral palsy. Although not a life-threatening condition, upper limb spasticity can be severely debilitating and painful, producing disfiguring muscle contractions that can result in stiff, tight muscles in the elbow, wrist and fingers, or a clenched fist. This stiffness hinders a patient’s ability to perform simple tasks, such as dressing or washing the hand, and often leaves the patient dependent on a caregiver to help with simple activities. “Upper limb spasticity can manifest weeks, months or even years after the original injury, possibly after a patient has stopped seeing a neurologist, physiatrist or their rehabilitation specialist, which is why it is severely undertreated and there’s a low awareness of the condition,” said Mitchell F. Brin, M.D., Allergan’s Senior Vice President Global Development, Chief Scientific Officer, BOTOX®. The approval of BOTOX® marks another important evolution in medical care, as we look to raise greater recognition and understanding of upper limb spasticity among patients affected by the condition, and refer them to a neurologist or physiatrist to explore their various treatment options.” In patients diagnosed with upper limb spasticity, BOTOX® is injected by a trained specialist directly into the affected muscles blocking overactive nerve impulses that trigger these disabling contractions to reduce the severity of increased muscle tone in the elbow, wrist and fingers. In clinical studies, the efficacy of BOTOX® persisted up to three months on average. BOTOX® is the first and only neurotoxin approved by the FDA for the treatment of upper limb spasticity.

Clinical Studies Evaluating BOTOX® For the Treatment of Upper Limb Spasticity

Allergan has conducted multiple studies evaluating the use of BOTOX® to treat upper limb spasticity, including three doubleblind, placebo-controlled studies, two of which were published in The New England Journal of Medicine,ii and Archives of Physical and Medical Rehabilitationiii. The first double-blind, placebo-controlled trial compared the safety and efficacy of BOTOX® treatment (200-240 units

(U)) with placebo over a 12-week period in 126 patients who had suffered a stroke at least 6 months prior and experienced increased wrist and finger flexor tone (scores of at least 3 for wrist flexor tone and at least 2 for finger flexor tone based on the Ashworth Scale). The Ashworth Scale is a globally accepted measure of muscle toneiv, which rates passive movement from 1 (normal muscle tone) to 4 (extreme increase in muscle tone). The study found that BOTOX® neurotoxin produced a statistically significant reduction in both wrist flexor and finger flexor muscle tone seen at the week 6 primary endpoint (P<.05 versus placebo).v,vi Further, evaluation by the Physician’s Global Assessment score, an investigator’s measure of a patient’s response to treatment, correlated with the Ashworth scores, showing a statistically significant difference favoring BOTOX® versus placebo at the primary endpoint (week 4).vii,viii The second study compared three doses of BOTOX® (360 U, 180 U, 90 U) with placebo over 24 weeks in 91 patients at least 6 weeks post-stroke with increased elbow flexor and wrist flexor tone (a score of at least 2 for elbow flexor tone and at least 3 for wrist flexor tone based on an expanded Ashworth Scale).ixx In this study, the 360 U group achieved statistically significant reduction versus placebo in wrist flexor tone at the week 6 primary endpoint. Similar results were observed in a clinical study that compared the same dosing regimens of BOTOX® (360 U, 180 U, 90 U) with placebo over 12 weeks in 88 patients at least 6 weeks post-stroke with increased elbow tone and wrist and/or finger tone (scores of at least 2 for elbow flexor tone and at least 3 for wrist and/or finger flexor tone based on the Ashworth Scale) xi . This study showed BOTOX® decreased muscle tone and achieved statistically significant decreases in wrist flexor tone, finger flexor tone and elbow flexor tone in the 360 U group at week 4xii. “For patients who suffer from upper limb spasticity, simple activities can be so challenging they must rely on a caregiver to pry open their hand and stretch back their fingers so they can wash their hands or get dressed,” said Allison Brashear, M.D., Professor and Chair, Department of Neurology at Wake Forest University Baptist Medical Center in Winston-Salem, NC. “In the clinical studies, we saw improvement in muscle tone in patients injected with BOTOX®, which was maintained for up to three months with no further injection.” In the double-blind, placebo controlled studies of BOTOX® for the treatment of upper limb spasticity, the most common adverse events occurred in less than 7 percent of patients and included pain in extremity, fatigue, muscle weakness, nausea and bronchitis.xiii

BOTOX® is a prescription-only medical product that contains tiny amounts of highly purified botulinum toxin protein refined from the bacterium, Clostridium botulinum. BOTOX® has a unique, protected molecular structure that stabilizes the core toxin in BOTOX® from degradation. When injected at approved and labeled doses into a specific muscle or gland, BOTOX® neurotoxin is expected to diffuse locally and expected to produce a safe and effective result by producing a localized and temporary reduction in the overacting muscle or gland, usually lasting up to approximately 3 to 6.7 months depending on the individual patient and indication. Specifically, the incidence of immunogenicity in patients treated with BOTOX® for upper limb spasticity is 0.53%. BOTOX® was first approved by the FDA 20 years ago for the treatment of strabismus and blepharospasm, two eye muscle disorders, making it the first botulinum toxin type A product approved in the world. Since its first approval, BOTOX® has been recognized by regulatory authorities worldwide as an effective treatment for 21 different indications in approximately 80 countries, benefiting patients worldwide. In the United States, BOTOX® is also approved to treat the abnormal head position and neck pain that happens with cervical dystonia (CD) in adults, and to treat the symptoms of severe underarm sweating (severe primary axillary hyperhidrosis) when medicines used on the skin (topical) do not work well enough. In addition to its therapeutic uses, the same formulation of BOTOX® with dosing specific to glabellar lines was approved by the FDA in 2002 under the trade name BOTOX® Cosmetic (onabotulinumtoxinA). The FDA approval of BOTOX® for the treatment of upper limb spasticity in adult patients marks the fifth therapeutic indication for the product in the United States since 1989. In addition to 20 years of clinical experience, the safety and efficacy of BOTOX® have been well-established in approximately 50 randomized, placebo-controlled clinical trials and in approximately 11,000 patients treated with BOTOX® and BOTOX® Cosmetic in Allergan’s clinical trialsxiv. Worldwide, approximately 26 million vials of BOTOX® and BOTOX® Cosmetic have been distributed and approximately 29 million treatment sessions have been performed over the past 20 years (1989-2009)xv. With approximately 2,100 articles on BOTOX® and BOTOX® Cosmetic in scientific and medical journals,xvi BOTOX® neurotoxin is one of the most widely researched medicines in the world. BOTOX® is a prescription medicine that is injected into muscles and used: • to treat increased muscle stiffness in elbow, wrist, and finger muscles in adults with upper limb spasticity. • to treat the abnormal head position and neck pain that happens with cervical dystonia (CD) in adults. • to treat certain types of eye muscle problems (strabismus) or abnormal spasm of the eyelids (blepharospasm) in people 12 years and older.

BOTOX® is also injected into the skin to treat the symptoms of severe underarm sweating (severe primary axillary hyperhidrosis) when medicines used on the skin (topical) do not work well enough. BOTOX® Cosmetic is a prescription medicine that is injected into muscles and used to improve the look of moderate to severe frown lines between the eyebrows (glabellar lines) in adults younger than 65 years of age for a short period of time (temporary). It is not known whether BOTOX® is safe or effective in children younger than: • 18 years of age for treatment of spasticity • 16 years of age for treatment of cervical dystonia • 18 years of age for treatment of hyperhidrosis • 12 years of age for treatment of strabismus or blepharospasm BOTOX® Cosmetic is not recommended for use in children younger than 18 years of age. It is not known whether BOTOX® and BOTOX® Cosmetic are safe or effective for other types of muscle spasms or for severe sweating anywhere other than your armpits.

Important Safety Information Including Boxed Warning

BOTOX® and BOTOX® Cosmetic may cause serious side effects that can be life threatening. Call your doctor or get medical help right away if you have any of these problems after treatment with BOTOX® or BOTOX® Cosmetic: • Problems swallowing, speaking, or breathing. These problems can happen hours to weeks after an injection of BOTOX® or BOTOX® Cosmetic usually because the muscles that you use to breathe and swallow can become weak after the injection. Death can happen as a complication if you have severe problems with swallowing or breathing after treatment with BOTOX® or BOTOX® Cosmetic. • Swallowing problems may last for several months. People who already have swallowing or breathing problems before receiving BOTOX® or BOTOX® Cosmetic have the highest risk of getting these problems. • Spread of toxin effects. In some cases, the effect of botulinum toxin may affect areas of the body away from the injection site and cause symptoms of a serious condition called botulism. The symptoms of botulism include: loss of strength and muscle weakness all over the body, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing. These symptoms can happen hours to weeks after you receive an injection of BOTOX® or BOTOX® Cosmetic. There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat severe underarm sweating, blepharospasm, or strabismus, or when BOTOX® Cosmetic has been used at the recommended dose to treat frown lines.

Vol. 7, No. 2 Do not take BOTOX® or BOTOX Cosmetic if you: are allergic to any of the ingredients in BOTOX® or BOTOX® Cosmetic. See the end of this Medication Guide for a list of ingredients in BOTOX® and BOTOX® Cosmetic; had an allergic reaction to any other botulinum toxin product such as Myobloc® or Dysport™, or have a skin infection at the planned injection site. Tell your doctor about all your medical conditions, including if you have: a disease that affects your muscles and nerves (such as amyotrophic lateral sclerosis [ALS or Lou Gehrig’s disease], myasthenia gravis or Lambert-Eaton syndrome). Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins and herbal products. BOTOX® and BOTOX® Cosmetic may cause loss of strength or general muscle weakness, or vision problems within hours to weeks of taking BOTOX® or BOTOX® Cosmetic. If this happens, do not drive a car, operate machinery, or do other dangerous activities. BOTOX® can cause serious side effects. Other side effects of BOTOX® or BOTOX® Cosmetic include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, and eye problems, double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes. Symptoms of an allergic reaction to BOTOX® or BOTOX® Cosmetic may include: itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Tell your doctor or get medical help right away if you are wheezing or have asthma symptoms, or if

you become dizzy or faint. Tell your doctor if you have any side effect that bothers you or that does not go away. For additional information refer to the Medication Guide. This Medication Guide summarizes the most important information about BOTOX® or BOTOX® Cosmetic. If you would like more information, talk with your doctor.

Forward-Looking Statement

This article and all information in it was provide by Allergan, Inc. and contains “forward-looking statements,” including the statements by Dr. Brin, and other statements regarding the safety, effectiveness, approvals, adverse events and market potential of BOTOX® and BOTOX® Cosmetic. These statements are based on current expectations of future events. If underlying assumptions prove inaccurate or unknown risks or uncertainties materialize, actual results could vary materially from Allergan’s expectations and projections. Risks and uncertainties include, among other things, general industry and pharmaceutical market conditions; technological advances and patents attained by competitors; challenges inherent in the research and development and regulatory processes; challenges related to product marketing, such as the unpredictability of market acceptance for new products and/or the acceptance of new indications for such products; inconsistency of treatment results among patients; general economic conditions; and governmental laws and regulations affecting domestic and foreign operations. Allergan expressly dis-

claims any intent or obligation to update these forward-looking statements except as required by law. Additional information concerning these and other risk factors can be found in press releases issued by Allergan, as well as Allergan’s public periodic filings with the Securities and Exchange Commission, including the discussion under the heading “Risk Factors” in Allergan’s 2009 Form 10-K. Copies of Allergan’s press releases and additional information about Allergan is available on the World Wide Web at or you can contact the Allergan Investor Relations department by calling (714) 246-4636.


iv v

About Allergan, Inc.

Founded in 1950, Allergan, Inc., with headquarters in Irvine, California, is a multi-specialty health care company that discovers, develops and commercializes innovative pharmaceuticals, biologics and medical devices that enable people to live life to its greatest potential – to see more clearly, move more freely, express themselves more fully. The Company employs more than 8,000 people worldwide and operates state-of-the-art R&D facilities and world-class manufacturing plants. In addition to its discovery-to-development research organization, Allergan has global marketing and sales capabilities with a presence in more than 100 countries.

SOURCE: Allergan i ii

Allergan data on file; Global Literature & Information Services Brashear A, Gorden MF, Elovic E, et al; for BOTOX® Post-Stroke Spasticity Study

vi vii

viii ix x xi xii xiii xiv xv xvi


Group. Intramuscular injection of botulinum toxin for the treatment of wrist and finger spasticity after a stroke. N Engl J Med. 2002;347(6):395-400 Childers MK, Brashear A, Jozefczyk P, Reding M, Alexander D, Good D, Walcott JM, Jenkins SW, Turkel C, Molloy PT. Dose-dependent response to intramuscular botulinum toxin type A for upper-limb spasticity in patients after a stroke. Arch Phys Med Rehabil 2004;85:1063–9. BOTOX® Prescribing Information Brashear A, Gorden MF, Elovic E, et al; for BOTOX® Post-Stroke Spasticity Study Group. Intramuscular injection of botulinum toxin for the treatment of wrist and finger spasticity after a stroke. N Engl J Med. 2002;347(6):395-400 Data on file, Allergan, Inc. 2009. CSR 191622-008, Table Brashear A, Gorden MF, Elovic E, et al; for BOTOX® Post-Stroke Spasticity Study Group. Intramuscular injection of botulinum toxin for the treatment of wrist and finger spasticity after a stroke. N Engl J Med. 2002;347(6):395-400 Data on file, Allergan, Inc., 2009. CSR 191622-008, Table BOTOX® Prescribing Information BOTOX® Prescribing Information BOTOX® Prescribing Information CSR BTOX 412-422-8051 BOTOX® Prescribing Information Allergan data on file; Medical Affairs Allergan data on file; Global Regulatory Affairs Allergan data on file; Global Literature & Information Services


Vol. 7, No. 2

Medicare Fraud... Continued from page 1

• Provider enrollment and certification information; • Information regarding CMS forms; • Information about coordination of benefits and Medicare as secondary payer; and • Subscription to an electronic mailing list service for those interested in receiving news from CMS. To subscribe, go to EmailUpdates/list.asp on the CMS website.

Kickbacks and Self-Referrals

The anti-kickback statute and the physician self-referral law are two important fraud and abuse authorities. Violations of these laws can result in nonpayment of claims, civil monetary penalties, exclusion from the Medicare Program, and liability for the submission of false claims to the government. Violation of the anti-kickback statute may additionally result in imprisonment and criminal fines. The Anti-Kickback Statute, set forth at § 1128B of the Social Security Act, (42 U.S.C. § 1320a-7b), makes it a criminal offense to knowingly and willfully offer, pay, solicit, or receive any remuneration to induce or reward referrals of items or services reimbursable by a Federal health care program. Where remuneration is paid purposefully to induce or reward referrals of items or services payable by a Federal health care program, the anti-kickback statute is violated. By its terms, the statute ascribes criminal liability to parties on both sides of an impermissible “kickback” transaction. For purposes of the anti-kickback statute, “remuneration” includes the transfer of anything of value, directly or indirectly, overtly or covertly, in cash or in kind. For more information see on the Internet. The Physician Self-Referral Prohibition Statute, commonly referred to as the “Stark Law,” is set forth at § 1877 of the Social Security Act, (42 U.S.C. § 1395nn). This statute prohibits physicians from referring Medicare patients for certain designated health services to an entity with which the physician or a member of the physician’s im-

mediate family has a financial relationship— unless an exception applies. It also prohibits an entity from presenting or causing to be presented a bill or claim to anyone for a designated health service furnished as a result of a prohibited referral. For more information see on the CMS website.

Advisory Opinions

In certain situations, upon formal request, the HHS Office of Inspector General may issue an advisory opinion with respect to the anti-kickback statute or OIG’s other fraud and abuse authorities, while CMS may issue an advisory opinion with respect to the physician self-referral prohibition. Advisory opinions are legal opinions issued to one or more requesting parties about the application to a party’s existing or proposed business arrangements of either the fraud and abuse provisions within the OIG’s scope of authority or the physician self-referral prohibition within CMS’ scope of authority. A CMS or OIG advisory opinion is legally binding on HHS and the requesting party or parties, but no person or entity can rely on an advisory opinion issued to another party. A party that receives a favorable advisory opinion is protected from CMS or OIG administrative sanctions, as the case may be, so long as the arrangement at issue is conducted in accordance with the facts submitted to the CMS or OIG. For more information on OIG advisory opinions, see: For more information on CMS advisory opinions, see:

Exclusions and Debarments What is the effect of an exclusion?

If you are participating in or billing a Federal health care program, you generally may not employ or contract with an excluded or debarred individual or entity. No payment will be made by any Federal health care program for any items or services furnished, ordered, or prescribed, directly or indirectly, by an excluded or debarred individual or entity. Federal health care programs include Medicare, Medicaid, and all other plans and programs that provide health benefits funded directly or indirectly by the United States (other than

the Federal Employees Health Benefits Plan).

OIG Website

The HHS Office of Inspector General is responsible for excluding individuals who have participated or engaged in certain impermissible, inappropriate, or illegal conduct. The OIG’s List of Excluded Individuals and Entities (LEIE) provides information on all individuals and entities currently excluded from participation in the Medicare, Medicaid, and all other Federal health care programs. The LEIE, along with other information pertaining to OIG exclusions, may be accessed at fraud/exclusions.asp on the Internet.

General Services Administration (GSA) Website

The GSA is responsible for maintaining an index of individuals and entities that have been excluded throughout the U.S. Government from receiving Federal contracts or certain subcontracts and from certain types of Federal financial and non-financial assistance and benefits. The GSA maintains the Excluded Parties List System (EPLS), which may be accessed at on the Internet.

Helpful Telephone Numbers:

U.S. Department of Health and Human Services (HHS) Office of Inspector General (OIG) If you have identified billing practices that cause you to suspect potential fraud or abuse, you may call the OIG’s National Hotline at 1-800-HHS-TIPS (1-800-4478477) to report the activity. Contacting the HHS OIG Hotline By Phone: 800-HHS-TIPS (800-447-8477) By Fax: 1-800-223-8164 By E-Mail: By TTY: 1-800-377-4950 By Mail: Office of Inspector General Department of Health and Human Services Attn: HOTLINE P.O. Box 23489 Washington, DC 20026 Centers for Medicare & Medicaid Services (CMS) Suspicions of fraud or abuse may also be reported to Medicare’s Customer Service Center at 800-MEDICARE (800-6334227) or by TTY at 877-486-2048.


CMS WEB RESOURCES • • • • • • • • •

OIG Listserv CMS Website CMS Mailing Lists Anti-Kickback Statute Physician Self-Referral OIG AOs CMS AOs EPLS Medicare Contractor Information

For questions about billing procedures, billing errors, or questionable billing practices, contact your Medicare Contractor. You can find Medicare Contractor contact information, including toll-free telephone numbers, at MLNProducts/downloads/ on the CMS website. The Medicare Learning Network (MLN) is the brand name for official CMS educational products and information for Medicare FeeFor-Service providers. For additional information visit the Medicarer Learning Network’s web page at on the CMS website. This resource reference was prepared as a service to the public and is not intended to grant rights or impose obligations. This reference may contain references or links to statutes, regulations, or other policy materials. The information provided is only intended to be a general summary. It is not intended to take the place of either the written law or regulations. We encourage readers to review the specific statutes, regulations and other interpretive materials for a full and accurate statement of their contents.

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.

…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.

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

…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.

…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.

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

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Vol. 7, No. 2

Paralympics ... Continued from page 1

of children sang and danced and were on either side of the stage when the first country was presented. The crowd was on their feet dancing and screaming (I am still hoarse) when the athletes came out, one country at a time. One surprise was the size of the Chinese team, which had about four athletes and none in wheelchairs, as the Czech Republic had about 50 athletes. Maybe, as there are no gay people in Iran, there is no one in a wheelchair in China. The USA got a loud roar, but nothing compared to when the Canadians rolled out on to the center stage. But the most emotional part of the program was the tribute to two Canadians, Rick Hanson who pushed around the world and who is an accomplished athlete. And to Terry Fox, at 22 years old ran 5,300K in 143 days across Canada, with a high AK amputation prosthesis, and died shortly after, from the cancer that took his leg. Rick Hanson took center stage to officially welcome the athletes and to pay tribute to competition. Terry Fox’s parents walked out on stage and handed the flame to a 15 year old snowboarder, who lit the flames to start the games. One technical mistake that happened at this moment, when the torch was handed over, the stage started

to rise, so the young boy with bilateral lower extremity amputations had to climb about five and a half feet up on to the stage to reach the huge caldron to ignite it. He was a true athlete, did not hesitate and made the climb up on to the stage to light it. As we walked and rolled out of the stadium, everyone was still feeling the excitement so as we made our way through the city of Vancouver we headed down to the water front to see if the official flames were ignited. On the final day of the Olympics, at the closing ceremony, the flames are extinguished, but they are to be relit on the opening of the Paralympics. When we arrived we were happy to see the ice crystal sculpture ablaze in flames. They were electronically linked so people that did not go the opening ceremonies watched to see the flames flare up at the same moment as they did in the stadium. One disappointment was that there is a cyclone fence around the flames, I expect to keep people from climbing on it, which looks ugly. Vancouver, as well as all of Canada, came out to embrace the Paralympics and I am sure the athletes from all over the world felt that embrace.


Photo courtesy of Mary Carol Peterson.

Andy Hicks is chair of the executive committee of the NSCIA national board of directors, and eastern regional sales manager for Altimate Medical Inc. ( ).

New Online Resource offers Job Search Tools, Career Content and Employment Opportunities ire Disability Solutions (www.hireds. com), a national leader in bringing together top companies and job seekers with disabilities and National Spinal Cord Injury Association (NSCIA), the nation’s oldest and largest civilian organization dedicated to improving the quality of life for all Americans living with spinal cord injury and disease (SCI/D) and their families, today unveiled a co-branded employment resource section on NSCIA’s website ( “This joint initiative makes Hire Disability Solutions’ job search tools, career content and resume posting capabilities available to all Americans living with a spinal cord injury or disorders, and their families, giving them access to an abundance of excellent employment opportunities,” said Jeffrey Klare, founder and chief executive officer, Hire Disability Solutions, LLC. Klare continued, “There is expected to be an estimated worker shortage of 35 million people by 2030, according to the National Business & Disability Council, and individuals with disabilities can help mitigate this shortfall. Together, our companies can play an important role in connecting employers and job seekers with disabilities, a group that has been largely overlooked in the past.” “Employment is fundamental to independence and high quality of life for anyone,” said K. Eric Larson, NSCIA’s ex-


ecutive director and CEO. “And this new partnership will help empower people with spinal cord injury and disease to achieve that.”’s job search tools are powered by Monster, helping to facilitate the company’s mission: “to give all that want a chance to succeed, the opportunity to succeed.” Hire Disability Solutions’ newly constructed site,, is designed to benefit the widest possible number of job seekers with disabilities.

About Hire Disability Solutions, LCC

Hire Disability Solutions was founded in response to the increasing demand for services for individuals with disabilities that promote inclusion into the mainstream employment world. Since its inception in 2004, Hire Disability Solutions has established itself as a national leader in protecting and enhancing employment opportunities for individuals with disabilities. Through its educational campaigns surrounding employment law, education opportunities and assistive technology, the company facilitates the success of individuals with disabilities and employers alike.

nal cord injury and disease (SCI/D) and their families. NSCIA educates and empowers survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfill-

ment. NSCIA provides information and resources through Spinal Cord Central ( ), a joint program of NSCIA and United Spinal Association. More about NSCIA is at www.


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Vol. 7, No. 2


Urologic Nurses Named Continence Care Champions


hen I received the most recent issue of SCILife I noticed an announcement asking for experiences from other spinal cord injured people that might encourage newly injured people. So here is my story. The National Association For Continence (NAFC) awarded Leslie Saltzstein Wooldridge, MSN, RNCS, GNP-BC, and Francie Bernier, PhD, MSN, RNC with the Rodney Appell Continence Care Champion Award at the Society of Urologic Nurses and Associates (SUNA) Annual Symposium on March 12, 2010. Presented by Megan Hansen, fund development manager for NAFC, this honor is sponsored by Pfizer Global Pharmaceuticals. After receiving her masters in nursing, specializing in critical care, Wooldridge worked in various emergency and medical/ surgical capacities. Lured by the challenges of working with older patients, she returned to school and earned another advanced degree as a gerontological nurse practitioner at Marquette University and later becoming a Fellow of the American Geriatric Society (AGS). In 1996, Wooldridge developed and implemented the Wellspring Innovative Solutions urinary incontinence best practices program in long-term care. She has published articles on normal aging, promoting social continence as well as her research in innovative technologies and treatments related to incontinence. In 2007 she wrote a chapter on genitourinary health in a textbook for the nurse practitioner in long-term care. As an independent nurse practitioner at Mercy Health Partners Bladder Control Clinic, in Muskegon, MI, Wooldridge continues her work

of improving the life and aging process in her Western Michigan community while continuing to focus on the future and the next generation of advancements for those she serves. Bernier began her career as a La Maze instructor in a United States Air Force base hospital in Japan. After working as an OB GYN staff nurse for nearly a decade, she became director of continence education at her clinic, in charge of pelvic floor rehab, subsequently becoming a national consultant lecturing both here and abroad. The Urologic Nursing has recognized her for her published research on pelvic floor rehabilitation for urinary incontinence and she has won SUNA’s first place research award for her landmark study of urinary incontinence in survivors of sexual abuse. Last year Bernier completed her PhD from the University of Virginia. Established in 2000 to recognize healthcare providers who serve as role models to others for outstanding contributions in research, education and clinical practice, NAFC’s Continence Care Champion Award raises awareness among a variety of professional societies and elevates the importance of addressing incontinence. A listing of all past award recipients can be found on NAFC’s website at, in the Hall of Fame.

About NAFC

The National Association For Continence is a 501(c)3 corporation whose mission is threefold: 1) to educate the public about the causes, diagnosis categories, treatment options, and management alternatives for incontinence, voiding dysfunction, nocturnal enuresis, and related pelvic floor disorders; 2) to network with other organizations and agencies to elevate the visibility and priority given to these areas; and 3) to advocate on behalf of consumers who suffer from such symptoms as a result of disease or other illness, obstetrical, surgical or other trauma, or deterioration due to the aging process itself. NAFC is broadly funded by consumers, healthcare professionals and industry. It is the world’s largest and most prolific consumer advocacy organization devoted exclusively to this field.

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

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

Vol. 7, No. 2

Greater Mobility Through Accessibility By Marie Clement, Ms. Wheelchair Kansas 2009


rior to New Years Eve of 1997, I never really thought about accessibility. And even after the rollover on that icy stretch of Wyoming highway that left me a c-7, t-1 incomplete quad, I was more concerned about how I was going to take care of my family from a wheelchair, especially my six-month old son. The subject of accessibility was still not in the forefront. I’d been living in and around Las Vegas, Nevada for the past 10 years. It is a constantly changing city that caters to tourists, many of them disabled, so needless to say accessibility was never a problem. Three months into my rehabilitation from 2 surgeries I was even able to take a birthday excursion in my wheelchair, with my 2 physical therapists in tow, down the block to the shopping mall for a new pair of sunglasses. There were curb cutouts on every corner and automatic doors at the mall! And by the time I was able to return home, my husband and 2 older sons had ramped up my home and fully remodeled my bathroom. I was even able to roll down to the corner grocery store and pharmacy that was several blocks down the street with my baby on my lap and mother in tow. I could even jump on a city bus if I desired, but never had to, since both my older sons and husband drove. So I never got to experience it, but I would often contemplate it. It wasn’t until 2002, after my youngest son turned five we decided it would be nice for him to start school at a small midwestern town and be closer to his grandmother, who had moved in with us after my accident to care for him while I was in the hospital, and had moved back to Kansas after I was able to handle the job myself.

Soon after we moved to Kansas, the need for accessibility became apparent. Every time we went out shopping or dining, it became a recon mission. I’d have to send in my scouts to assess the target, be it dining or shopping, and come back with intel about the bathroom situation, the entry, and floor room available for me to negotiate with my chair. I realized I couldn’t be the only one with this problem. There had to be other people in wheelchairs in Kansas, but maybe that would explain why I didn’t see very many when I was out and about. That is when I researched the web for resources in my area to let me know what was accessible and found none. So I decided to start taking notes on where I go and the level of accessibility. I would try to go someplace different for shopping and dining. Be my own “secret shopper” so to speak. It was when I was compiling my info I got a call from one of the nurses from the Indian Health Center where I go for checkups. She said that my tribe, the Prairie Band Potawatomi, had been involved with the Ms. Wheelchair Kansas Pageant for years and this year they wanted to sponsor a tribal member with a disability to compete and I was their first choice. It was then I had this Oprah “Ahha” moment. This would be an excellent opportunity for me, to get what would become my platform “Greater Mobility through Accessibility”, to a broader audience. My platform was the belief that if there was more accessibility, more disabled people would be able to get out in their world to experience many of the things they had prior to their disability, and those that have always been, would get to experience the things they always wanted to, thus creating greater numbers of disabled in the public eye so they can see once and for all that the numbers the government uses for statistics is a low-ball quote to keep monetary assistance to a minimum. Since my crowning I’ve turned 50, had the honor of traveling all around the state of Kansas as a keynote speaker. I’ve been invited to mentoring events as a role model and spokesperson for Kansas disabled. I’ve also had the pleasure of traveling to Washington D.C. for National Centers for Independent Living (NCIL) Conference

as a member of the board of directors for Three Rivers Inc, which I was asked to join their board soon after my crowning, and of course I accepted. And of course, the cherry on this sundae was going to South Dakota for the Ms. Wheelchair America 2010 Pageant! I was fortunate enough to meet 26 wonderful and accomplished women in their own rights that were there to represent their individual states. The whole week was like pageant boot camp. Through the workshops and interaction with all, I learned a broader horizon of issues that everyone faces in their lives. My issue is keeping people aware of the need of accessibility. And although my state is full of historical buildings and quaint cobblestone town squares, it is possible to


make them fully accessible and asthetically pleasing at the same time. As soon as my term as Ms. Wheelchair Kansas 2009 is over, I fully intend on starting my website resource for the disabled so they can take advantage of the knowledge I’ve accumulated through trying different venues every time I go out, and which stores I’ve found to be wheelchair-friendly. I’m hoping for a world in the future like Ms. Wheelchair Kentucky, Amy Foster spoke when presenting her platform at the Ms. Wheelchair America Pageant, one of universal architecture so people never have to set limits on their travels depending on their disability. This has definitely become the civil rights movement of the last two decades.



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

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 From left Sharon Joseph( founding member of Kansas chapter of ADAPT), Tiffany Nickel( Ms. Wheelchair Kansas 2010), Marie Clement, and Brook Ziegler.

“ I love SpeciaLiving — absolutely love it.” Marilyn Berg, Beverly Hills, Florida

Vol. 7, No. 2


resource center Spinal Cord Central Most Popular Resources By SCC staff


ave you visited Spinal Cord Central (SCC), the joint resource center of National Spinal Cord Injury Association (NSCIA) and United Spinal Association? If not, you may not only be missing out on some great information and resources, you are passing up a chance to work with Spinal Cord Central staff to improve our resource base. As we continue to expand the comprehensive SCI/D content available at Spinal Cord Central, the interactive nature of our resource ‘Knowledge Books’ allows us to obtain valuable feedback from you, our constituents living with SCI/D, your family members, and SCI/D professionals. If you haven’t yet had the chance to explore our resources, check them out now at www. Spinal Cord Central is staffed by information specialists that direct and educate you on all things related to SCI/D. The SCC staff includes individuals living with quadriplegia and paraplegia, a SCI rehabilitation nurse and a credentialed social worker. Together our two organizations have more than 120 years of SCI/D experience.

research NRH Launches Research Project Website


he National Rehabilitation Hospital in Washington, DC, has established the Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury and launched a project web site at The National Spinal Cord Injury Association is a proud collaborator of this five-year project, funded by the National Institute on Disability and Rehabilitation Research (NIDRR). The project will focus on the prevention and management of secondary conditions among individuals with SCI, with particular focus on pressure sores,

Where do I locate an appropriate rehabilitation facility for my family member who has just incurred a new SCI? What about my insurance coverage? How do we adequately prepare our home for a loved one after rehab? Home remodeling, transportation, travel and especially SCI/D secondary condition resources are just some of the important topics that our SCC Information Specialists tackle every day. SCC offers you the opportunity to browse our Knowledge Books filled with information useful to the SCI community. Knowledge Books are organized by major topic areas alphabetically. If you prefer, a search function is also available. Then let us know how we’re doing by marking a particular resource page as either ‘helpful’ or ‘not helpful’ in answering your question. It should be no surprise that after a traumatic injury or spinal cord disease onset that financial assistance is of great interest, especially in the current economy! Among cardiovascular disease, and obesity. The overall mission of the Center is to improve the quality of life for people with SCI through improved health. To do this, the Center has two broad goals. First, the Center will conduct several important clinical research studies in order to discover new knowledge and information about how individuals with SCI can prevent secondary conditions. Second, the Center will be focused on making sure that this new knowledge and information is being received directly by the members of the SCI community. Outreach efforts will specifically target those who are underserved, such as individuals who are low-income or who do not speak English fluently. Additionally, the Center will work to further educate health care professionals who do not specialize in SCI, such as primary care physicians. New material and useful information will be posted regularly. You can register to receive an email alert whenever the site is updated by becoming a subscriber (look for the “subscribe” link on the homepage). The project has just gotten started but already visitors can view some material such as a brief video on “how to do pressure reliefs”, as well as consumer fact sheets, which provide critical information about select secondary conditions such as osteoporosis and diabetes. Center staff members are always looking to receive feedback and suggestions from the community, and encourage visitors to do so through the website. The goal of the website is to be a valuable resource in helping any person with an SCI to be informed about how to stay healthy.

the top search choices of visitors to SCC are Federal funds and loans for home modifications for accessibility, Federal and State benefits as well as other sources of financial assistance such as individual grant opportunities. Some of those grants you have found helpful are the Bryon Riesch Paralysis Foundation, the Challenged Athletes Foundation Access for Athletes Grants, the Chanda Plan Foundation, The Kevin Kitchnefsky Foundation and G.O.A.L.S. (Go Out and Live Successfully). Your feedback on the ‘Locating a Physiatrist’ Chapter has been helpful to us. While it is clearly important to be able to locate a physiatrist near you with the proper experience, you have also indicated that the search process was difficult. Thanks to your feedback, we have recently revised the Physiatrist locator information for a quicker and more productive search experience. Spinal Cord Central information specialists work for you, the SCI community! We have all been touched by SCI/D in some

way and thus look forward to helping others by sharing our experiences. We update and expand our SCI/D Knowledge Books on a continual basis so we are always pleased to receive suggestions for additional resources to be included in on Spinal Cord Central.


• Visit • Browse or search for SCI/D topical information • Contact SCC: • Call-If you cannot locate what you need, or would prefer to speak with an information specialist directly, please call 800962-9629 8:30a -5:00p Eastern, M-F except federal holidays If you have resource information you believe would be appropriate for addition to an existing Knowledge Book of SCC, please e-mail that to us. And, keep using SCC Knowledge Books and giving us feedback on the usefulness of resources.


September/October 2007

Vol. 7, No. 2

employmentSPINAL CORD INJURY ASSOCIATION THE NATIONAL Campaign for Disability Employment Showcases Diverse Talents and Skills ofName People with Disabilities

The National Spinal Cord Injury Association (NSCIA) is a non-profit membership organization for people with spinal cord injuries, diseases and dysfunction, their families, their related service providers, policy makers, organizations, hospitals and others interested in the issues affecting the spinal cord injury community. Our mission is to enable people with spinal cord injuries, diseases and dysfunction to achieve their highest level of independence, health and personal fulfillment by providing resources, services and peer support.

Street very State, day, people with disabilities add City, Zip value to America’s workplaces – and, (very important, if available) E-mail now, they can inform employers and others about their talents, abilities and employment success through a new Web site membership type: andPlease publiccheck education campaign. The Campaign for Disability Employ■ Individual with SCI/D ment, a newly-formed collaborative of lead■ Family member of friend ing■disability business organizations, Individualand service or health care provider has■launched What Can YOU Do?, a naOrganizational tional effort designed to promote the hiring, retention and advancement of people with disabilities and dispel negative stereotypes about disability and employment. ■ Check Enclosed ■It Credit is easy for(Visa, people with disabilities, Card Mastercard, Amer. Exp.) and others, to participate in the Campaign on card andName drive positive change. For example, Card # theCredit Campaign’s Web site, www.whatcanyExpiration Date, offers users the chance My donation is $ their commitment to disto learn, express ability employment efforts and share their NSCIA Member Services employment SCILife, experiences. HDI Publishers,APOmicro-blog Box 131401, interface on the site invites people with disHouston, TX 77219-1401 (713)employers 526-6900 and othabilities to helpPhone educate ers about their diverse talents and skills by


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I am interested in supporting NSCIA with:

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sharing ■ what “can do” at work. Giftsthey of real estate The ■site also features grassroots tools Including NSCIA in my will and tangible ideas for supporting the Campaign’s goals, as well as video public service Toll free (800) 962-9629 announcements (PSAs) that challenge asFax (713) 526-7787 e-mail:about sumptions people with disabilities web site: and employment. Included in the video cut out & return “I Can” library is the Campaign’s flagship


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


SCIA will celebrate 14 new inductees and an emerging leader at the 3rd annual Spinal Cord Injury (SCI) Hall of Fame gala and induction ceremony on the evening of Tuesday, Nov. 6, at the John F. Kennedy Center for the Performing Arts in Washington, D.C. in recognition of the accomplishments of people with SCI and those committed to their quality of life. Once again, NSCIA will be host to a performance on the Millennium Stage, followed by the 2007 induction ceremony and a dessert reception in the Roof Terrace Restaurant. Nashville based singer/songwriter JP Williams will perform on the Millennium Stage, and award-winning journalist, Leon Harris will emcee the event. Hosted last year by inaugural SCI Hall of Fame member and former Dateline NBC correspondent John Hockenberry, this black tie optional celebration is attended by business professionals, government officials from a variety of departments including the U.S. Departments of Health and Human Services, Labor, Justice, EduPSA, intended for nationwide television cation, Housing and Urban Development broadcast, and “Meet Sue”, winner of the and the Social Security and Veterans AdWhat Can YOU Do? Video Contest, which ministrations, healthcare providers, media invited aspiring filmmakers to produce their representatives, researchers, individuals, and own videos in support of the Campaign’s families – all of whom share a commitment goals. to maximizing the quality of life for people The Campaign for Disability Employwith spinal cord injury and disease. ment seeks to promote positive employ-

ment outcomes for people with disabilities by encouraging employers, and others, to recognize the value and talent that people with disabilities bring to the workplace, as well as the dividend to be realized by fully including people with disabilities at work. The This Campaign is a collaborative beyear’s categories includeeffort Assistive tween the American Association of People Technology, Benefactor, Corporate Execuwith Disabilities (AAPD); National Busitive, Disability Activist, Disability Educator, ness and Disability Council (NBDC); NaEntertainment, Entrepreneur, Government tional Council of La Raza (NCLR); NationExecutive, Grassroots Organizer, Legislative, alMedia, Gay and Lesbian of Commerce Research in Chamber Basic Science, Research (NGLCC); Society for Human Resource in Quality of Life, and Sports. In addition, Management (SHRM); Special Leader,” Olympicsa NSCIA will award an “Emerging (SO); and the U.S. Business Leadership special award which was introduced last year Network (USBLN). fundin conjunction withThe the Campaign 2006 SCI isHall of ed by the U.S. Department of Labor’s Office Fame. of Disability Employment (ODEP), The process began inPolicy August when receives technical assistance from the Job NSCIA called for nominations. Far exceedAccommodation Network (JAN) and is ing last year’s nominations by almost 50 supported by the Disability Policy Research stellar nominees, NSCIA has received more Center (DPRC) at West Virginia University. thanmore 165information, qualified nominees! These nomiFor visit www.whatcanynees were voted on by NSCIA members and reviewed by a selection committee to ratify the voting. One nominee from each category will be inducted and celebrated at the gala. Formed NSCIA in 2005, the SCI The onlybyway to GUARANTEE Hall of Fame was created to celebrate and honoryou individuals organizations receive and every issue of that have made significant contributions to quality of lifeSCILife and advancements toward a better is to subscribe! future for all individuals with spinal cord injury and disease. Only $15.00 for allabout six annual issues! To find out more the SCI Hall of Fame or to see a list of previous inductees or this year’s nominees, visit www. Visit

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Vol. 7, No. 2

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

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

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: E-mail: 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: Leon S. Peter’s Rehabilitation Center P.O. Box 1232, Fresno, California, 93715 Phone: (559) 459-6000 Ext. 5783 Contact: Ray Greenberg E-mail: CONNECTICUT CHAPTER Connecticut Chapter, NSCIA P.O. Box 400, Wallingford, Connecticut, 06492 Phone: (203) 284-1045 Contact: Jeff Dion Website: E-mail: 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: FLORIDA SUPPORT GROUPS Peer Support Contact 313 Spider Lily Ln, Naples, Florida, 34119 Phone: (239) 353-5894 Contact: Mindy Idaspe E-mail: Sea Pines Rehabilitation Hospital 101 East Florida Ave., Melbourne, Florida, 32901 Phone: (321) 984-4600 Contact: Ellen Lyons-Olski E-mail: 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: 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: E-mail: INDIANA SUPPORT GROUPS Calumet Region Support Group 2109 Cleveland St., Gary, Indiana, 46406 Phone: (219) 944-8037 Contact: Rita Renae Jackson Email: Northwest Indiana SCI Support Group 1052 Joliet Rd, Valparaiso, Indiana, 46385 Phone: (219) 531-0055 Contact: Joe White E-mail: IOWA CHAPTER Spinal Cord Injury Association of Iowa 3936 NW Urbandale Dr, Urbandale, Iowa 50322 Phone: (515) 554-9759 Contact: Angie Plager Website: Email: KANSAS CHAPTERS Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: KENTUCKY CHAPTER Derby City Area Chapter, NSCIA 305 W. Broadway, Louisville, Kentuky, 40202 Phone: (502) 588-8574 Contact: David Allgood, President Website: E-mail: SUPPORT GROUP Friends with Spinal Cord Injuries 3785 hwy 95, Benton, Kentucky, 42025 Phone: (270) 205-5675 Contact: Anndrea Coffman E-mail: MARYLAND SUPPORT GROUP Kernan Hospital SCI Support Group 2200 Kernan Dr., Baltimore, Maryland, 21207 Phone: (410) 448-6307 Contact: Jenny Johnson Website: 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: E-mail:

Whittier Westborough Support Group 150 Flanders Road, Westborough, Massachusetts Phone: (508) 871-2000 Ext. x2165 Contact: Deb Website: MICHIGAN CHAPTER MSCIA 1938 Woodslee Drive, Troy, Michigan 48083 Phone: (248) 288-2270 Contact: Stacey Murphy E-mail: MISSISSIPPI SUPPORT GROUP Magnolia Coast SCI Support Group 12226 Oaklawn Rd., Biloxi, Mississippi, 39532 Phone: (601) 969-4009 Contact: Michelle Bahret Website: Email: MISSOURI CHAPTER Greater Kansas City SCIA 5701 West 110th St, Overland Park, KS. 66211 Phone: (913) 491-5667 Contact: Linda Klaiber Email: SUPPORT GROUP Southwest Center for Independent Living 2864 S. Nettleson Ave., Springfield, Missouri, 65807 Phone: (417) 886-1188 Contact: Marion Trimble Website: E-mail: NEVADA CHAPTER Nevada Chapter, NSCIA 4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121 Phone: (702) 988-1158 Fax: (702) 951-9637 Contact: Brian “Moose” Hasselman Website: E-mail: 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: Website: NEW YORK CHAPTERS Greater Rochester Area Chapter, NSCIA P.O. Box 20516, Rochester, NY, 14602 Phone: (585) 275-6097 Contact: Karen Genett E-mail: Phone: (585) 275-6347 Contact: Amy Scaramuzzino E-mail: 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: E-mail: 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: Phone: (315) 247-0927 Contact: Maria Froio E-mail:

SUPPORT GROUPS BMC Support/Discussion Group 7 West-Harrison Ave Campus, Boston, Massachusetts Phone: (617) 414-5000 Website:

Long Island Spinal Cord Injury Phone: (631) 221-9255 Contact: Ron Quartararo Website: E-mail:

Spaulding Support/Discussion Group 125 Nashua Street, Boston, Massachusetts Phone: (857) 222-5123 Contact: Betsy Pillsbury Website:

NORTH CAROLINA CHAPTER NCSCIA 3701 Wake Forest Rd., Raleigh, North Carolina, 27609

Phone: (919) 350-4172 Contact: Deborah Myers E-mail: Contact: Karen Vasquez E-mail: OHIO CHAPTERS Northwest Ohio Chapter, NSCIA 13745 Archbold Whitehouse Rd Swanton, Ohio 43558 Phone: (419) 875-4029 Contact: Hank Burney, President Website: E-mail: Phone: (419) 531-6401 Contact: Becky Gay E-mail: Northeast Ohio Chapter, NSCIA c/o Jeff Schiemann, PO Box 934 Chesterland, Ohio 44026 Phone: (440) 442-5550 Fax: (440) 442-5789 Contact: Jeff Schiemann E-mail: Website: SUPPORT GROUP Hillside Rehabilitation Hospital 8747 Squires Lane, Warren, Ohio, 44484 Phone: (330) 841-3856 Contact: Rebecca Lebron E-mail: Phone: (330) 889-2158 Contact: Rick Ackerman E-mail: 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: 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: 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: 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: Contact: Rafe Ellisor, Chairman E-mail: Website: 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: Florence, SC Area SCI Support Group Phone: (843) 679-9932 Contact: Ronnie McFadden E-mail: Greenville Area SCI Support Group 190 McCall Road, Honea Path, South Carolina, 29654 Phone: (864) 369-2791 Contact: Byron Armentrout E-mail: 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: Orangeburg, SC Area SCI Support Group 627 Flatwoods Road, Bowman, SC 29018 Phone: (803) 829-2043 Contact: Rebecca Felder E-mail: Spartanburg, SC Area SCI Support Group 101 St. Matthews Lane, Spartanburg, South Carolina, 29301 Phone: (864) 595-1947 Contact: Dot Colson E-mail: York/Rock Hill Area SCI Support Group Phone: (803) 366-5659 222 S. Herlong Avenue, Rock Hill, SC 29732 Contact: Bob Alders E-mail: 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: Website: 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: 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: Website: 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: 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: 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: Contact: John Dziewa E-mail: Website:

For a current listing of Chapters and Support Groups, visit, or call 800.962.9629. If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our Helpline: 800.962.9629.

Vol. 7, No. 2



Vol. 7, No. 2

National Mobility Equipment Dealers Association | Driving Independence

Help your clIents get on tHe roaD to InDepenDence The National Mobility Equipment Dealers Association assists those affected by a disability to get back in the driverâ&#x20AC;&#x2122;s seat. NMEDA is an Association of Mobility Dealers, Manufacturers and Rehabilitation Professionals that advocates and mediates for providing safe, reliable vehicles and modifications to enhance accessibility for all people. Our Quality Assurance Program (QAP) promises additional member benefits like advanced accreditations, safety guidelines and 24-hour emergency service. As the governing body of mobility products, NMEDA can direct your clients to the best products, services and qualified dealer for them to adapt to a life with new abilities. 866.948.8341


4/14/10 9:17:29 AM

SCILife, Vol. 7, № 2  

March/April, 2010

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