Newsweek "My Turn" Essay by Aplastic Anemia Patient
 

Mark Schreiber, an aplastic anemia patient who is being treated by Dr. Maciejewski at the Cleveland Clinic, has written an essay that appears in the "My Turn" column in the January 21, 2008 issue of Newsweek magazine.

His essay focuses on the difficulty of living with an "orphan" disease which most people have never heard of. He notes with some humor that although there are no telethons to raise money for research, you never have to wait long for an appointment with a doctor who specializes in treating aplastic anemia.

You can read Mark's essay online or watch for it on the newstands this week.

Letter to the Editor
 

Neil Horikoshi, Chairman of the AA&MDSIF Board of Directors, sent the following Letter to the Editor to Newsweek:

To the editor:

Like Mr. Schreiber who wrote the recent "My Turn" article, I too have aplastic anemia—and great admiration for Dr. Maciejewski. I am living proof of the fruits of research: it was at the National Institutes of Health where Dr. Neal Young pioneered research in this orphan disease, and his success with immunosuppressant treatments literally saved my life and the lives of many others. Grateful to the Aplastic Anemia and MDS International Foundation (AA&MDSIF) which had led me to Dr. Young, I joined its board of directors in 2005 and have come to know Dr. Maciejewski who serves with many other distinguished experts, including Dr. Young, on our Medical Advisory Board. I can attest to both his kindness and his brilliance, not to mention his dedication to patients.

True, we don’t have telethons, but thousands of people across the country have helped to raise more than $1 million that the AA&MDSIF has awarded in research grants over the years. Run by patients and families, the Foundation has a global support network of volunteers, as well as an annual conference, and red-and-white ribbons to symbolize the red and white blood cells that people with bone marrow failure so desperately need. All in all, the AA&MDSIF provides answers, support, and hope. But, yes, we are still an orphan disease. All the more reason we are grateful to the Food and Drug Administration’s Office of Orphan Products Development which helps companies bring to market drugs for rare diseases and to NIH which funds the Bone Marrow Failure Disease Consortium through its Rare Diseases Clinical Research Network.

No question, there is much to be done to improve treatment options for aplastic anemia and other rare bone marrow failure diseases. There is also reason to be optimistic about all that the future holds.

Neil H. Horikoshi, J.D., M.B.A.
Chairman, Aplastic Anemia and MDS International Foundation, Inc.