FDF launches a critical campaign for more research funds

Every year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that could help the rare disease community, including the OPEN ACT and NIH research funding. These programs are important to the FD/MAS community because they encourage rare medical research and provide incentives for the pharmaceutical industry to invest resources in what would otherwise be a relatively small consumer audience, rare patients. However, unlike 2019’s initiative, these programs are not FD/MAS specific.


FD/MAS advocates meeting with Representative Tim Burchett (R-TN)

This year, FDF launched an exciting new campaign that could mean more federal research funding for FD/MAS.

FDF is leading the way to add FD/MAS as a topic area in the Peer Reviewed Medical Research Program (PRMRP) of the Department of Defense Congressionally Directed Medical Research Program (CDMRP). CDMRP supports biomedical research driven to find cures, improve treatment and care to diseases that affect service members, veterans, their families, and the American public. This funding would complement research done at NIH, yet have a stronger focus on promoting development and implementation of new drugs and treatment.

FD/MAS advocates across the country are meeting with their Senators to tell their FD/MAS story and talk about how researching FD/MAS can support important medical discoveries for those outside of the FD/MAS community as well, including those in the military. Due to the importance of the gene that causes FD/MAS, there is a great deal of potential for FD/MAS research to shed light on other diseases. In fact, FD/MAS research has a track record of contributing to generalizable knowledge on bone biology.


FD/MAS Research can shed light on medical issues that affect the general population

Deanna Portero, FDF’s Executive Director, FDF’s President Lauren Ruotolo and FD/MAS advocate Lee Ann Brown at the Capitol

FD/MAS research is a valuable opportunity to advance knowledge of other musculoskeletal conditions of great interest to the military, including blast-induced heterotopic ossification, skeletal fractures, hearing loss, osteoarthritis, and osteoporosis. FD/MAS research also provides a unique window to study the prevention, onset, and treatment of chronic bone pain, which is an important military need. CDMRP can drive significant clinical research aimed at discovering treatments by targeting critical gaps in science and disease. The program supports supporting high risk, high impact, and high reward research.

This incredible opportunity couldn’t take place without the support of an army of FD/MAS advocates. While the Fibrous Dysplasia Foundation can identify opportunities like this one, and help create trainings and materials to prepare advocates to tell their stories, federal legislators only will listen if that message is told by one of their constituents. We’re grateful to advocates like Sarah Healy, Skye Miu Steppe, Lauren Rachelle Foster, the Corvelles, the Rozenblums, and other advocates for meeting with their Senators’ offices to discuss the importance of FD/MAS research.

You could be the difference in whether or not this research funding becomes reality!

Visit our advocacy page to learn more about how you can support this campaign by giving just 3 minutes of your time. Your words could open up hundreds of thousands of dollars of research funding for FD/MAS research! 

You can also save the date for Rare Disease Week 2020: February 25-28, 2020. This is a great opportunity to come to Washington, DC, and help Congress understand why the FD/MAS community needs support. Travel stipends from the Everylife Foundation may be available. Applications for stipends are usually accepted in the Fall/early-winter.

FD/MAS Advocate and FDF Board member Sarah Healy meeting with Sen. Chris Coons and other rare disease advocates