Letter from the Executive Director: Adrienne McBride
Although 2020 has been a challenging year, we wish you all a peaceful, safe and happy holiday season! Because of your continued support during this turbulent year, your community, the FD/MAS community is moving forward. Here are some highlights.
- Fibrous Dysplasia Foundation is now The FD/MAS Alliance. We’ve refocused our mission, rebranded our trade name, and relaunched our website. This recognition expands the breadth and depth of our community to make sure everyone who identifies as FD or MAS patients feel included. Visit us at www.fdmasalliance.org.
- Our advocacy has ensured that FD remains a topic area of the Department of Defense Congressionally-Directed Medical Research Funding. Three advocates, nominated for participation in the program by the FD/MAS Alliance, participated in evaluating research applications submitted to the PRMRP. As consumer reviewers, they were full voting members (along with prominent scientists) at meetings to help determine how the $360 million appropriated by Congress for Fiscal Year 2020 will be spent on PRMRP research. More information about this initiative is available at the website: https://cdmrp.army.mil/prmrp/default.
- In our sixth year participating in the Million Dollar Bike Ride (MDBR), we partnered with the UPenn Orphan Disease Center and will award a grant in excess of $60K to eminent scientists that may lead to better treatments for FD/MAS and we have been invited back in 2021!
- The FD/MAS Patient Registry is an IRB approved project with over 100,000 data points. With over 900 individuals enrolled, researchers have access to one of the largest cohorts of FD/MAS patients worldwide. We are proud that 6 research projects have used the FD/MAS Patient Registry. We continue to build on this critical resource to stimulate future pharmaceutical research.
- And, our renowned Scientific Advisory Council members, who all work as volunteers, reviewed MDBR grants and provided recommended options for applying other funds raised by donors to high-quality FD/MAS research projects specifically a $60K grant to develop a mouse model for studying the poorly understood central nervous-system manifestations of MAS
I am so proud of our collective work and I hope that you are as well. Please enjoy our newsletter and may the new year mark the start of better days ahead.