thank you! - Reflex Sympathetic Dystrophy Association of America

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Board of Directors James E. Tyrrell, Jr. Esq. Chairman of the Board Paul Charlesworth, CPCU President Mary Beth Kenny Ludington Patient Representative/Secretary Donald F. McKee Treasurer Rebecca C. Amoroso Bradley S. Galer, MD Wilson H. Hulley Disability Advocate Linda Lang Pierre LeRoy, MD Donald C. Manning, MD, PhD Betty Maul Peter A. Moskovitz, MD Idamarie Scimeca Duffy James W. Broatch, MSW Executive Director and Newsletter Editor Tel: (203) 877-3790 Toll free: (877) 662-7737 Email: info@ rsds.org RSDSA website www.rsds.org Newsletter Managing Editor: Debra Nelson-Hogan Email: Newsletter@rsds.org Editorial Assistant: Katie L. Aker RSD has been assigned the code number 337.2. It has been classified into four categories: (1) 337.20 – unspecified site (2) 337.29 – other specified site (3) 337.21 – upper extremity (4) 337 – lower extremity How to give to RSDSA through the United Way RSDSA is a partner in the combined Federal campaign. Our designation number is #11045. Working to raise awareness of reflex sympathetic dystrophy syndrome (RSD) and complex regional pain syndrome (CRPS) since 1984. As many of you know, November is CRPS Awareness month, and this year has been particularly jam-packed with events. On November 6, I went to Somerset Medical Center in New Jersey to attend a meeting of the wonderful support group Living with RSDS. Their president, Sharon Weiner, had arranged for a special guest speaker to address the group. The speaker was Mike Roman, a former surgical assistant, who at 27 had knee surgery following a basketball injury. Unfortunately, he developed MRSA, the devastating staph infection that has recently been in the news. Despite multiple surgeries to remove the infection, Mike was forced to undergo an above-the-knee amputation. After surgery, he developed phantom limb pain, with many of his symptoms similar to those of CRPS. Mike spoke quite movingly about his long journey of debilitating pain, depression, financial difficulties and withdrawal from family and friends. Feeling that he had become a burden to his family, he briefly considered suicide. His wife’s support remained constant, and he fortunately ended up at a pain specialist who urged him to try a new type of spinal cord stimulator. This decision proved to be the turning point for him. A devoted husband and father, he is now pursuing his dream of professional racecar driving, and is aiming for the Indy 500. His courage and indomitable spirit were an inspiration to all of us, and you can read his story at raceagainstpain.com. News From the Patient Representative By Mary Beth Kenny Ludington The next big event was the Bounty of Hope on November 14. Always a fun evening, it is also an important one, as it raises both money and awareness. Proceeds from the dinner and silent auction fund many of RSDSA’s awareness projects. This year’s honoree was Dr. Joshua Prager, who utilized a PowerPoint ® presentation to graphically depict the symptoms of CRPS to the audience. He also described the success of the comprehensive multidisciplinary treatment program he directs at the Center for the Rehabilitation of Pain Syndromes at UCLA. The month ended with Jim Broatch and board member Dr. Peter Moskovitz accepting an invitation from the Korean Pain Society and the Korean CRPS Association to speak at their conference. They also visited with some of the foremost CRPS experts in Europe at the Neuropathic Pain Consortium in the Netherlands. Their visit enabled them to examine the state of emerging research across the globe, to explore the possibility of collaboration on a study of the long-term effects of CRPS and to forge important relationships with leaders in the field in other countries. I was tremendously impressed by the fact that they accepted the invitation knowing that they would have to miss Thanksgiving with their families. That level of dedication and commitment gives us ALL something to be grateful for this holiday season! n 2 RSDSA Review: Vol. 20, Issue 3
(Continued from page 1) The Puerto Rico Occupational Therapy Association sent $50. Your kind notes and words of encouragement were very heart warming. Together, we are making a difference. In October, the MN RSDS/CRPS Coalition sponsored its second walk-a-thon to raise money for CRPS research. More than 40 individuals from Minnesota, Wisconsin, and as far away as Connecticut, participated and thus far, we have raised more than $10,000! I want to thank Bonnie Scherer, Linda Loudermill, Barbara VanKeuren, and the MN RSDS/CRPS Coalition for their hard work and dedication. In three major walks (two of the walks were cosponsored with the Achilles Track Club), RSDSA raised $40,000, a little more than in 2006. We know that the CRPS community has the potential for promoting much greater public awareness and research dollars. In 2008, we hope to raise more than $100,000 for CRPS research. With your help, we will succeed. n Thanksgiving By Paul R. Charlesworth President, RSDSA Board of Directors During this season of Thanksgiving and joy it is easy to forget those who suffer in silence from CRPS. So many go undiagnosed, untreated, undertreated, can’t afford treatment, can’t resolve conflicts, don’t get understanding or support from friends or family, don’t get insurance reimbursement, get despondent and try suicide. I want you to know how much Jim Broatch ,our executive director, Gayle Bonavita our administrative assistant, our entire board, and our many volunteers around the country want to help. Call us if you need help or if you know someone else who does…help us with that first step of communication. We are a small organization, but we have grown and we are very determined to continue with our mission of support, information, and search for effective treatments and a cure as soon as possible. Most who interact with RSDSA have little sense of the board of directors or our two wonderful full-time employees. Their thanks is in what they accomplish for you and the organization. During this season, I would like to thank them and urge all of you who read this to thank them in any way you find appropriate as well. All of our Board members serve as day-today workers for RSDSA, not just members of the governing body. Most of all I would like you to know how very motivated they are to succeed and help find a cure. Take hope in their work and the work of the many researchers who now work in the field of CRPS. Last, I would like you to know that we are going in some new directions to help. Rather than simply reviewing research proposals submitted to us, we are now funding a long-term research proposal with the help of a very generous benefactor family and we are raising money to fund conferences to help establish the best data about incidents of CRPS and best treatment approaches. As we expand our mission we need your financial support and your volunteer support more than ever. Please help us provide more help and research…talk it up with people you know, especially friends and family. Please accept our best wishes for a joyous holiday season. n Join RSDSA People who join RSDSA are not content to be victims, but take an active role in our goals of education, awareness, and research. Our members are people like you-patients, family and friends, healthcare professionals, attorneys, and business people who understand the devastating effects of CRPS and want to make a difference. Your RSDSA membership is important. There is power in numbers and we would like to see our membership, currently more than 7,000, double so that when we talk to the legislature, the pharmaceutical companies, and medical associations, our voice is strong and our message is clear. As a member, you have a forum to communicate your concerns, share your experiences, and learn about the most recent advances in treatment and research. Fill our the membership application and join today! Yes! I would like to be a member and support RSDSA ❑ Patient (US) $15 ❑ Patient (outside US) $25 ❑ Can’t afford membership Name Address ❑ Additional donation City State Zip Phone email ❑ Please send me information on starting a support group. For credit card orders, please complete: ❑ Visa ❑ MasterCard ❑ American Express Card Number exp. Date Signature Please make check or money order in $US payable to RSDSA. Mail your check with this form to: RSDSA, 99 Cherry Street, PO Box 502, Milford, CT, 06460 3
Page 1: Volume 20, Issue 3 R e f l e x S y
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Page 19 and 20: $1,500 and Above Ronald P. Goldfade

thank you! - Reflex Sympathetic Dystrophy Association of America

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