Deep Thanks from Team FD/MAS 2026 and the UPenn Orphan Disease Center’s Million Dollar Bike Ride
We’re thrilled to share that Team FD/MAS has raised
$28,161.07 through the generosity of
103 donors, and donations continue to come in.
Special thanks are owed to Cindi Brandt Levin, our dedicated Team Captain and the visionary who saw that an organized community can change the trajectory of rare disease research and treatment. Levin shared leadership this year with co-captain Sarah Healy, who has earned her stripes in recent years by showing up with helmet in hand and cyclists recruited, ready to ride on behalf of our community.
Team FD/MAS has historically been a powerful way for the FD/MAS community to influence the science and treatment of fibrous dysplasia, McCune-Albright syndrome(FD/MAS). This year’s campaign will continue that tradition by advancing initiatives developed during the 2026 FD/MAS Research Priorities Workshop. Over the next year, this means:
- Advancing Evidence-Based Research: In 2026, the FD/MAS Registry upgrade will allow the Alliance to pursue our own research initiatives by analyzing Registry data and exploring some key questions raised by the community.
- Advocating for critical legislation: Researchers rely on large federal research opportunities to advance their promising ideas to the next phase of discovery. Team FD/MAS helps ensure these vital pathways remain open and allows us to pursue other legislative initiatives that protect the FD/MAS community.
- Building Community Resources: FD/MAS Alliance is committed to hosting monthly opportunities to connect with others. Our website provides free, open access to evidence-based research and resources. Team FD/MAS’s generosity will also lay the groundwork for our next in-person conference.
UPenn’s Million Dollar Bike Ride has empowered the FD/MAS community to be the drivers of research and well-being initiatives. We are eager to continue that momentum and to build upon our decade of success. We’re truly grateful for your continued support in this process.
About FD/MAS and FD/MAS Alliance:
Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and debilitating disease without an FDA-approved treatment. It causes fibrous tissue to grow in place of healthy bone and often causes chronic pain, loss of mobility, hormonal imbalances, skin marks, deformity, and more. There is no cure and no way to slow the disease down.
FD/MAS Alliance was formed by a group of patients and caregivers who believed that those living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) needed and deserved better.
Team FD/MAS’s Role:
In 2014, Cindi Brandt Levin organized and attended an FD/MAS Alliance Family Conference. “I saw there was such a need for more research, and felt there had to be more we could do as a community,” Levin recalls. “When I found the UPenn Orphan Disease Center’s Million Dollar Bike Ride, I knew we had to start our own team.” Since 2015, Levin has served as captain of Team FD/MAS and rallied the community to raise over $1.2 million for FD/MAS research, supporting 22 projects, many of which have gone on to secure multi-million dollar research grants.
“Over the last 20 years, we’ve built a research network, a caring community, and a better understanding of this rare bone and endocrine disease,” says Tovah Burstein, Executive Director of FD/MAS Alliance. “We are so proud of our accomplishments-and it wouldn’t be possible without determined individuals like Cindi stepping up to support this work.”
Team FD/MAS Supports our Mission:
- Advance evidence-based research
- Educate clinicians, families, and the broader population
- Amplifying the voices of the FD/MAS community
We see a path ahead, and if you want to see these advances continue, we hope you will consider supporting our work. Your gift can determine how ambitious we can be as we aim for the next milestone in advancing the priorities of the FD/MAS community. Thank you!
FD/MAS Alliance is a community-driven 501(c)3 nonprofit that fosters the development of evidence-based treatments for fibrous dysplasia and McCune-Albright syndrome (FD/MAS). We advance research, provide education, and channel the voices of individuals and caregivers with FD/MAS.