The following was taken from the Aplastic Anemia & MDS Foundation INSIDER- Spring 2009
Act now to support current legislation to secure federal dollars for service and research
H.R. 1230- Bone Marrow Failure Research and Treatment Act of 2009
On February 29, 2009, Rep. Doris O. Matsui (D-CA) introduced the legislation wich would in crease the federal government's
commitment to researching and treating acquired bone marrow failure diseases, including aplastic anemia, myelodysplastic syndromes
and paroxysmal nocturnal hemoglubinuria. It also directs the deparment of health and human services to develop a comprehensive
strategy the includes:
*a national bone marrow failure disease registry so that researchers con combine their data in one place, yielding more
effective research designs and better results
*pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors
cause people to acquire bone marrow failure diseases
*minority focused programs to make information on treatment options and clinical trials available to minority communities,
particularly Hispanic and Asian American communities
*Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients
with bone marrow failure diseases.
In total, the legislation authorizes $8 million annually for fiscal years 2009-2013. As many know, Congresswoman Matsui's
husband, the late Congressman Bob Matsui had MDS.
On another note-
Dr. Hinh Ly, Emory University
Telomere Maintenance in Patients with Aplastic Anemia
Dy Ly's study examined various mutations in a protien called TIN2 (THIS IS WHAT HAPPENED TO COULTER)
in patients with acquired aplastic anemia. Dr. Ly concluded that blood cells with these TIN2 mutations grew slower than cells
collected from healthy individuals, which explains why cells from aplastic anemia patients turn over, or mature, more quickly.
These results may offer a new cellular target for the development of new therapies against bone marrow failure diseases.
*We knew this from Dr. Alter and Dr. Savages work..but it's nice to know someone else is looking for
answers!
