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Here's what I know.
Grassroots lobbying brought about the Congressionally Directed Medical Research Program (CDMRP) of the Department of Defense in 1992.
In 2007, Congresswoman Doris O. Matsui led an effort to add funding for bone marrow failure disease research to that program. That effort succeeded, with $1 million in funding allocated in 2008. Since then the average annual funding has been higher, at about $2.7 million per year. It's a positive step but a "drop in the bucket" compared to funding for research related to other diseases.
From 2009 to the present, Congresswoman Matsui has introduced congressional bills to have the Dept. of Health and Human Services (HHS) establish a national bone marrow failure disease registry, perform studies, do minority outreach, and give grants for improving diagnostic practices. Last year the bill passed the House but not the Senate.
Advocates still encourage supporters to contact their congressperson and senators to express support for the bill and ask that they co-sponsor or support the bill. Your messages probably draw more attention if you explain your personal connection to the issue and why the bill has your support.
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