AAMDSIF at 35: Recounting Three and a Half Decades of Commitment and Progress
This year marks the 35th anniversary of AAMDSIF. Over the years, this special community helped each other and loved ones battle Aplastic Anemia, MDS and PNH. Amidst all of our individual stories, we have witnessed moments of courage and a lifetime of hope, with our main wish being to see a future where bone marrow failure disease is universally curable.
In the Beginning
In 1983, Bart Fisher’s seven year old son, Ivan, was diagnosed with Aplastic Anemia. At the time, little was known about treating this or any other kind of bone marrow failure disease. Ivan was treated at the Johns Hopkins University Hospital, but lost his battle just over three months after his diagnosis, when he was eight years old. Shortly thereafter, Bart established what is now the Aplastic Anemia & MDS International Foundation (AAMDSIF) in 1984..
An early advocacy achievement was the passage of the National Organ Transplant Act in 1984. This legislation authorized the creation of the National Marrow Donor Program which operates the bone marrow transplant registry. A few years later, the Navy provided $1.2 million for the registry so that sailors and submariners may benefit in the event of the explosion of a nuclear submarine. Today more than 27 million potential donors are registered, all of whom are prepared to donate their healthy marrow to patients in need of a bone marrow transplant.
Progress in Research
The Foundation awarded our first research grant in 1989. Since then, AAMDSIF has awarded over $5 million to support innovative research and promising new investigators. Several of our grant recipients have emerged as highly respected leaders in the field of bone marrow failure research. In 2008, AAMDSIF played a significant role in advocating for the U.S. Department of Defense’s Bone Marrow Failure Research Program (BMFRP), which has awarded $32.6 million since its inception. AAMDSIF also established the first of its kind MDS Clinical Research Consortium in 2012 with support from the Edward P. Evans Foundation.
35 years later, the Foundation continues its work serving as the patient voice in advocacy and partnering with academic institutions, government agencies, and the pharmaceutical industry. We provide education and resources to health professionals and patients diagnosed with aplastic anemia, MDS, PNH, and related bone marrow failure diseases, including AML, CLL, CMML, GVHD, Myelofibrosis, MPN and PRCA. The Foundation remains dedicated to finding better treatments and ultimately cures for bone marrow failure diseases.