site logo
Click to toggle navigation menu.

News

HomeBlogFoundation NewsResearch NewsI started because I’m a mom, I keep going because I see the progress.

I started because I’m a mom, I keep going because I see the progress.

To the fibrous dysplasia, McCune-Albright syndrome community,

Last month’s Team FD/MAS research update revealed truly exciting progress by the researchers we support – breakthroughs that offer real hope, especially in tackling the agonizing pain and relentless growth of fragile, and malformed bone that so many people diagnosed with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) endure.

This progress, directly addressing the most critical needs of the FD/MAS community, is only possible because of the decade-long, $1.2+ million investment by Team FD/MAS and the FD/MAS Alliance. I started Team FD/MAS because I’m a mom to a daughter with this disease, and I’m incredibly proud of what we’ve achieved together.  I also know that, right now, rare medical research needs our support more than ever. 

The FD/MAS Alliance is committed to accelerating the path to effective treatments by:

  • Protecting strong federal research funding. Team FD/MAS awardees need these large federal research opportunities to advance their promising ideas to the next phase. 
  • Opening opportunities for further investigation through pilot grants and collaborative research conferences. 
  • Empowering patients to engage with research via the FD/MAS Patient Registry and education on promising therapies that could be within reach if we act now.

We’re at a pivotal moment. The landscape of medical research is changing rapidly, with government funding cuts affecting so many diseases. We must seize this opportunity to make a lasting difference for the FD/MAS community. Your support is more crucial than ever. 

Please donate to support Team FD/MAS 2025 today. Your generosity is not just appreciated – it is critical to fuel this vital work.

With profound gratitude,

Cindi Mom of Carly, Vice-President FD/MAS Alliance 


P.S. I would love you to join me with Team FD/MAS at the Million Dollar Bike Ride at UPenn on June 14th! Please reach out via info@fibrousdysplasia.org if you’d like to learn more!