Reflex Sympathetic Dystrophy Association of America

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I have CRPS in all 4 extremities: upper back, back of head, ears, lower abdomen. I really look forward to the newsletter and also the e-mail alerts... I think it very important to support all that you do for me ....if only 15 dollars a year spent with medical professionals could do for me what this website does Thanks so much! Terry Lundon Aliso Viejo, Ca The RSDSA website, newsletters, brochures, and other tools, not to mention the dedication of people who understand the ramifications of the devastating pain brought about by reflex sympathetic dystrophy syndrome, are responsible for letters like this one from our members. This, and many others, underscore our success in meeting our mission, year after year. In many ways, 2004 was an exceptional year for the Reflex Sympathetic Dystrophy Association of America (RSDSA). In September, we hosted our Second International Update on CRPS/RSD in San Diego—our first West Coast conference. Comments from presenters and attendees alike confirm the importance of our vision to educate as many healthcare professionals as possible. This was reinforced by the response to a mailing of a telltale signs handicard to the 57,000 members of the American Academy of Family Physicians. Subsequently, we mailed the card to members of the American Academy of Physician Assistants. Additional comments from attendees at the conferences where we exhibit indicate a need for more educational initiatives. Mission Statement Our mission is to promote public and professional awareness of Reflex Sympathetic Dystrophy Syndrome (RSD), also known as Complex Regional Pain Syndrome (CRPS), and to educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it What’s in a Name? Because the medical community has almost universally accepted Complex Regional Pain Syndrome (CRPS) to describe what we know as reflex sympathetic dystrophy, the RSDSA has chosen to use the term CRPS/RSD in all of our publications. causes. We encourage individuals with CRPS/RSD to offer each other emotional support within affiliate groups. And finally, we are committed to raising funds for research into the cause and cure of CRPS/RSD. How we meet our mission We talk to people who have CRPS/RSD, their families, and their friends. Every year, we help thousands of people find treatment through physician referral services and via support groups. Although RSDSA cannot recommend specific treatment for people with CRPS/RSD, we do provide information on clinical practice guidelines and we are in constant contact with people with CRPS/RSD, to offer ideas and, most of all, hope and support. Mary Beth Kenny Ludington, Linda Lang, Idamarie Scimeca Duffy, Gayle Bonavita, and Wilson Hulley, along with executive director Jim Broatch, answer countless e-mails, letters, and phone calls. Patients are concerned with medical treatment and research, but also want information on dealing with insurance companies, managing the financial devastation that accompanies their disability, negotiating the myriad government services, and more. We provide tools to educate people who have CRPS/RSD and their friends and family. Using our quarterly newsletter, the RSDSA Review, a bi-monthly Support Group Newsletter, and our comprehensive website, we provide the most up-to-date information on medical news, research, treatment and special events for the CRPS/RSD community. Approximately 24,000 people visit our website every month. Also, we send electronic alerts, small news releases The Cover: The RSDSA is an amazing group of people who work tirelessly to raise awareness of CRPS/RSD. Clockwise from top left: Jenny Dye (left) and Barbara Schaffer of the RSDAware Support Group at their annual golf outing, which raises funds for CRPS/RSD research; board member Wilson Hulley and Star, his service dog; 2004 Bounty of Hope dinner and Silent Auction organizers Mary Beth Ludington, Nick Warnock Master of ceremonies and special guest), Betty Maul, and Sharon Weiner; Linda Lang, board member and author; Paul Charlesworth, RSDSA Board President.
or requests for information to an an e-mail list of approximately 1,500 people who have CRPS/RSD or are interested in the syndrome. In addition, we continually update our publications and brochures, including In Pain, Out of Work, Can't Pay the Bills, a resource directory that can be downloaded from our website and is also available in hard copy. Our other important tools include Recognizing, Understanding, and Treating RSD/CRPS, Treating Complex Regional Pain Syndrome: A Guide for Therapy, and Helping Children/Youth With RSD/CRPS Succeed in School. We educate physicians and other healthcare professionals. In addition to conferences and mailings, RSDSA produced a new exhibit banner to call attention to the diagnosis, treatment, and management of CRPS/RSD. In 2004, we exhibited at several professional medical conferences, 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, and the National Chronic Pain Society Meeting. In 2004, we initiated a partnership with several CRPS/RSD support groups around the country to exhibit at state school nurses conventions. We paid for booth space and provided materials, and the support groups manned the booths. Special Events The annual Bounty of Hope awards dinner, held every November in New York City, is an opportunity to honor individuals who have made a difference to the CRPS/RSD community and educate attendees who come from a variety of backgrounds. In 2004, Nick Warnock, one of the finalists in the original Apprentice TV series was the master of ceremonies. Mary Beth Kenny Ludington chaired the silent auction committee and Betty Maul and Sharon Weiner go chaired the overall event. It is through the herculean efforts of our volunteers that this event continues to grow. The Scientific Achievement Award was presented to the chairs of the RSDSA Scientific Advisory Committee, R. Norman Harden, MD and Srinivasa N. Raja, MD. In addition, we honored the RSDAware Support Group in Pennsylvania for their achievement in raising awareness of CRPS/RSD in their state. Most notably, the group was instrumental in getting an RSD Awareness Bill passed and signed into law. In addition, support-group events, such as the RSDAware annual golf outing, have raised research funds. Bounty of Hope 2004 Hero of Hope Barbara Schaffer (representing the RSDAware Group), Nick Warnock, Master of Ceremonies, and Norman Harden, MD, who shared the Scientific Achievement Award with Srinivasa N. Raja, MD (not pictured). Jim Broatch, executive director, RSDSA; artwork from the New Yorker is only one of more than 100 items in the annual silent auction.
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Reflex Sympathetic Dystrophy Association of America

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