[Relentless Against SAA]

I would like to encourage you to write your Federal Congressmen requesting funding and support of Dr Neal Young and the Hemtology Dept at NIH. I can tell you that Dr Young and his staff are fighting everyday to find the cause and cure for MDS, Aplastic Anemia, and PNH. If you are someone who was treated for Bone Marrow Failure and your counts are good, you may not feel that NIH benefits you. If you are someone that NIH could not see, you may feel that NIH does not benefit you. Dr Young and his staff do care about you.

At our visit Dr Young made several things clear
#1) The patients well being is his highest priority. The benefit of being seen at NIH and being placed on a clinical trial must out weigh the risk. Someone skeptical of NIH said "since there are so few patients with these rare diseases, NIH might place people on clinical trails just to increase their data". This is not true. You come first!
#2) Promacta should not be used outside of a clinical trail at this time for Aplastic Anemia. The long term effects of this med are not known. Yes, it is appropriate for some patients but only after very long consideration by an extremely experienced team who is watching the patient closely and following a clinical trail protocol.

Now I am going to ask you to Please Please write your Federal Congressman to support the Hematology Dept of NIH and continue their funding . Everyday Dr Young and his staff are fighting for people with Aplastic Anemia, MDS and PNH. We need to stand together and fight for them.