Quote:
Originally Posted by KMac
I was wondering, since you are posting this message and it sounds like you are in contact with the hematology team at NIH, is there a recent threat to their funding and/or an arising need for additional funding that prompted you to write this message? I ask because any threat to NIH hematology funding would be very concerning! If I write my elected officials, is there either a) an imminent threat to their funding or b) a need for increased funding for further research, that I should mention in particular?
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KMac,
I am not sure if the funding for the Hematology Dept at NIH is secure or not. What I can tell you is at the end of our visit as I was thanking Dr Young, he asked that I write my Congressmen. I wrote them immediately and will continue to do so. Even if there is not an imminent threat, I would like Congress to know that the people of the USA want and need this research to be continued. Since it effects so few of people I could see that this would be the funding to be decreased first. I feel strongly that the pharmaceutical companies will not invest in Rare Disease Research. I realize they answer to stock holders who want a significant return on their investment. I do feel strongly about our need to stand together and fight to secure the future of people with rare diseases. Everywhere I look I see media attention given to breast cancer, lung cancer, colon cancer, etc. The list goes on and on. I know first hand the effects of these horrible diseases. Yet at the same time, it scares me because I hardly ever hear anything about Aplastic Anemia, PNH, or MDS. If we don't speak out to Congress, no one else will. Please, everyone who reads Marrow Forums, Please write your Congressmen in support of Rare Disease Research.