Reflex Sympathetic Dystrophy Association of America

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I was able to get SS Disability the first time I applied because of your site! The State assigned me a caseworker. I explained my condition and gave him the code so he was able to find it in his book of covered disabilities. It helped him understand it better too. So I just wanted to say, “THANK YOU SO MUCH!” Debra Sjolseth Palmer, Alaska We depend on corporate support Jim Broatch works with foundations, corporations and individuals to fund our projects. Celgene, the Medtronic Foundation, Endo Pharmaceutical, Purdue Pharma, Pfizer, Elan, and several other organizations have generously supported our initiatives. We fund research RSDSA is the only national organization that actively funds more than $75,000 annually for CRPS/RSD research and has to date funded $723,665 in research grants. In 2002-2003, we funded four major university-based research studies, a total of $101,265 in research support. These include creation of a rat model for CRPS Type I/RSD for use in research to treat CRPS/RSD at the nerve Injury Unit at Massachusetts General Hospital in Boston; measuring changes in CSF cytokine levels in RSD at Drexel University School of Medicine, Philadelphia; and collecting epidemiological and clinically relevant information from people with CRPS/RSD via the Internet at Johns Hopkins School of Medicine, Baltimore. In 2004-2005, we funded new evidenced-based clinical practice guidelines. Goals For fiscal year 2005, we are funding the writing and editing of revised Clinical Practice Guidelines, which will provide much-needed information for the medical community. A separate grant has been designated to validate four diagnostic criteria for CRPS/RSD. This information is needed so that the International Association for the Study of Pain (IASP) will adopt them. RSDSA Leadership RSDSA is led by an all-volunteer Board of Directors comprised of CRPS/RSD, people with CRPS/RSD, parents of individuals with CRPS/RSD, physicians, representatives from the pharmaceutical industry, and business people. The board meets annually to formulate long- and shortrange strategic plans. Board members pay their own travel expenses to attend these meetings. Board officers Chairman of the Board James E. Tyrrell, Jr., Partner in Latham & Watkins President Paul R. Charlesworth, (parent of a person with CRPS/RSD) Treasurer Donald F. McKee, Managing Director, Capstone Financial Management Secretary/ Patient Representative Mary Beth Kenny Ludington (person with CRPS/RSD) Members Bradley S. Galer, MD, Vice President of Scientific Affairs, Endo Pharmaceuticals Peter A. Moskovitz, MD, physician and author Linda Lang, businesswoman, author, and a person with CRPS/RSD Wilson H. Hulley, Disability Advocate, served on the President's Commission for Employment of People With Disabilities; a person with CRPS/RSD Pierre LeRoy, MD Donald C. Manning, MD, PhD, Celgene Corporation Executive director James W. Broatch, MSW In addition, we are working on an initiative to educate both the medical community and consumers about the suggested link between athletic injuries and subsequent surgeries and the development of CRPS/RSD. RSDSA will also launch a new quarterly newsletter for risk managers and case managers to educate these sectors on the importance of early diagnosis and appropriate treatment for people who develop CRPS/RSD. Most important, we will continue on our mission to educate the community at large about CRPS/RSD through our publications, our website, and increased
RSDSA 2004 Accomplishments • • Spent $100,000 for research, including creating an on-line survey to collect epidemiologic and clinically relevant information from people with CRPS/RSD. • Launched a direct mail campaign to the 57, 000 members of the American Academy of Family Physicians with an offer of a complimentary copy of Living with RSD, a comprehensive resource on CRPS/RSD. We mailed more than 600 books! The physicians also asked for additional telltale handicards, e.g. for 45 residents at the Family Medicine Program at Florida Hospital, 150 handicards for the Maine Academy of Family Physicians meeting, and for assistance in developing a CME course for the Mississippi Academy of Family Physicians. Dr. Whaty Jones of Edgewater, Maryland wrote, "I received a sample of the card the other day. Today I 'caught' a WC (Workers Compensation) patient with 'telltale' signs. I gave her my only copy of the card and referred her to the pain specialist. Please send me 50 more cards." Building on this success, we sent a similar informational mailing to 12,000 members of the American Academy of Physician Assistants and Physician Assistants. The package consisted of the two-sided, laminated Handicard that depicts the 11 telltale signs of RSD/CRPS with a pain assessment scale on the flip side. • Updated and printed In Pain, Out of Work, Can't Pay the Bills, a resource directory for our members who suffer financial devastation as a result of RSD. This directory is "live' on the Internet and is now available in hard copy. We distribute it at medical meetings, to crisis hotlines, libraries, State Department of Social Services, and other referral sources. • Revised and printed Recognizing, Understanding, and Treating CRPS/RSD, an informational brochure particularly valuable for those newly diagnosed with the syndrome Jenny Dye, Barbara Schaffer, and Richard Ulrich, RSDAWare Group, were instrumental in getting Pennsylvania House Bill 99 passed. Conducted the Second International Update on RSD/CRPS in San Diego, Sept. 11-12. This two-day CME-accredited conference educated more than 200 physicians and people with CRPS/RSD. Their feedback underscores the need for continued education on the diagnosis and treatment of this devastating syndrome. The presentations have been archived on our website (www.rsd.org) and can be downloaded. • Created a new exhibit booth with the headline, "A Minute of Your Time… Can Prevent a Lifetime of Suffering." We used it at several conferences and conventions, including the American Physical Therapy Association, American Pain Society, National Athletic Trainers Association, American Academy of Physical Medicine and Rehabilitation, American Public Health Association, National Workers Compensation and Occupational Medicine Seminar, National Chronic Pain Society Meeting, National Workers' Compensation and Disability Conference, and numerous state school nurse association meetings. • Supported RSDSA members and their families through the bi-monthly Support Group Newsletter, the quarterly RSDSA Review and our website. In 2004, approximately 24,000 people visited the site each month. • Worked with state and local organizations to help pass CRPS/RSD awareness and education legislation. In 2004, RSDAware and its members were instrumental in passing Pennsylvania House Bill 99, which educates health care workers and the public about CRPS/RSD. The group is working with the Pennsylvania Department of Health to make sure that the bill is implemented and, with the help of RSDSA, to develop the program as a model for other states.
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