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February 2008 Dear Friends, Recently, I read an article in Newsweek magazine, entitled “Falling Into A Medical Abyss”. It details the story of Mark Schreiber who suffers from a rare disease called severe aplastic anemia. In the article Mark tells how difficult is for a patient with a rare disease to find knowledgeable physicians and support. His story is similar to what most of us have experienced with one major difference – we are working together to climb OUT of the medical abyss. We have worked hard, in a unified effort, to try and find a cure while supporting each other. Recently, physicians and scientists have told me that there is more momentum than ever before in the search for better treatments and a cure. I am very excited as I look forward to this year. New treatment protocols are on the planning boards and are expected to be implemented this year. The HAA is collaborating with the Histiocyte Society to collect disease data through the use of an online data base making it easier and faster for physicians to register patients. A recent HAA funded project resulted in discovering a previously unknown disease process that one day could result in new treatment therapies. Astounding advances have been made in identifying several genes that can cause hemophagocytic lymphohistiocytosis, making it possible for physicians to look at gene therapy as a possible intervention. With our encouragement, the Histiocyte Society has included adult LCH within their studies and meetings. Plans call for presentations at an adult Hematology/Oncology conference about the diagnosis and treatment of adult LCH, as well as more rare disorders like Erdheim-Chester Disease, Rosai-Dorfman, and others. As scientific knowledge increases we continue to support and educate families across the country. We expect to announce, in the near future, the dates and location of our next National Meeting. For those of you who experienced that fantastic meeting we had in Our new website continues to amaze us as we learn even more about its capabilities. A recent example is the educational videos that we have been able to make available to anyone, anywhere in the world. Another example is that you can now get involved and take advantage of our web site to help you raise funds as recently shown by our online “Dear Friend’s Campaign”. Perhaps the most important point to make about our website AND the Association is to make sure you join! If you are reading this and have not yet joined the Association by filling out our online form please do so now. It’s free to join and you will begin to receive important information about new developments and our e newsletter. We will be phasing out much of what we do in terms of printing and actually mailing newsletters and other announcements. This results in a substantial savings to the HAA and more money for research. If you have joined the HAA make sure you keep your e mail address current. If you talk with another patient or family who has not joined please encourage them to do so. This IS an exciting year and with your help we have accomplished much. Importantly, we are climbing our way out of the medical abyss. Sincerely,
Jeff
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