FDMAS Alliance

10/18/2026

FD/MAS Alliance Executive Director Tovah Burstein recently attended the American Society for Bone and Mineral Research (ASBMR) Annual Meeting alongside several Alliance stakeholders, including Board Director Mike Wyzga. As the world’s largest gathering focused on bone, mineral, and musculoskeletal research, the meeting brought together more than 2,500 clinicians and researchers.

Reflecting on the experience, Tovah shared how encouraging it was to see so many dedicated professionals working to better understand FD/MAS and identify new treatment options. Newly appointed Board Director Camryn Berry, Ph.D., also attended the meeting, where Camryn presented a poster highlighting how a Team FDMAS-funded pilot study helped secure a larger federal grant to expand the research.

10/15/2026

100 Voices: Inform FD/MAS Therapeutic Development

Help us hear from 100 people living with FD/MAS and caregivers! GondolaBio, a biotechnology company exploring a potential FD/MAS therapy, is partnering with the FD/MAS Alliance to understand your experiences, unmet needs and treatment priorities. Your input can inform therapeutic development, FDA engagement and clinical trial planning. The program is very early stage, and your perspective can help guide the work ahead.

Take the 15-minute survey:

Your Input is Needed! What do you wish scientists and researchers understood about living with FD/MAS? Your input can inform therapeutic development and clinical trial planning. Take the 15-minute survey now! GondolaBio, a biotechnology company developing potential medicines for rare genetic disease...

10/12/2026

Join us for the October Community Meet Up- Research Update Follow Up with Camryn Berry, Ph.D. on Wednesday,October 14th from 7:30 - 9:00 PM EDT. Let’s talk about FD/MAS research and how patients can be a driving force for new discoveries.

Register to receive the meeting link:
https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/



If you were unable to attend our recent Research Update, you can now watch the recording on our website.

10/10/2026

FD/MAS Alliance is thrilled to announce that Camryn Berry, Ph.D., has been elected to our Board of Directors. Camryn is a postdoctoral research fellow in the Department of Anesthesiology, Critical Care and Pain Medicine at Boston Children's Hospital and Harvard Medical School, where she studies the biopsychosocial mechanisms of pain in FD/MAS. She has served on our Patient Advisory Council since 2024, and we are excited to welcome her into this new leadership role.

Read more on our website: https://fdmasalliance.org/fd-mas-alliance-welcomes-camryn-berry-ph-d-to-board-of-directors/

10/08/2026

We are very grateful to the many members of our community who were able to attend our FD/MAS Alliance Fall 2026 Research Update program. It speaks volumes about the commitment to moving research forward and to finding new treatments for all those living with fibrous dysplasia and McCune-Albright Syndrome.

We would like to thank our featured speaker, Jaymin Upadhyay.MD of Boston Children’s Hospital, and our moderator, Michael Collins, MD. Their continued dedication to the FD/MAS community provides hope to us all!

If you were unable to attend, you can now watch the recording on our website.
https://fdmasalliance.org/fall-2026-fd-mas-research-update/

10/05/2026

Living with a rare disease can be isolating. Sharing your journey with fibrous dysplasia and/or McCune-Albright Syndrome can be both uncomfortable and liberating; but knowing it may provide hope to others oftentimes is the key motivation to being so open. That's why FD/MAS Alliance thinks it's important to share real stories of the real people who make up our incredible community.

Amplifying the FD/MAS journey is a focus of the FD/MAS Alliance. We aim to share stories that are universal; ones that others in the FD/MAS community can relate to. In addition, we also spotlight unique experiences that offer a certain vantage point that is new, different, special, and/or inspiring.

We are looking for more written stories to share on our website and social media. We'd love to learn more about what makes you YOU! If you'd like to be featured (or you'd like to nominate someone to be featured) fill out the form on our website and we'll be in touch!
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https://fdmasalliance.org/share-your-fd-mas-story/

10/03/2026

Don't forget to register for the FD/MAS Alliance Research Update webinar focused on recent developments in the field of fibrous dysplasia, McCune-Albright syndrome, driven by FD/MAS Alliance advocates and collaborators. The event will take place on on October 6th at 1 PM EDT (5:00 pm GMT).

Featured speaker, Dr. Jaymin Upadhyay of Boston Children’s Hospital, will review the initial results from a pilot study supported by the FD/MAS community and published in Bone, a peer-reviewed academic medical journal. This study focused on pain in fibrous dysplasia and McCune-Albright syndrome. There will also be an opportunity for questions from attendees.

https://fdmasalliance.org/fall-2026-fd-mas-research-update/

/MAS

09/28/2026

Join us for the October Community Meet Up- Research Update Follow Up with Camryn Berry, PhD on Wednesday,October 14th from 7:30 - 9:00 PM EDT. Let’s talk about FD/MAS research and how patients can be a driving force for new discoveries.


https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

09/24/2026

Reminder: Don't forget to register for the FD/MAS Alliance Fall 2026 Research Update on October 6th at 1 PM EDT (5:00 pm GMT).

Featured speaker, Dr. Jaymin Upadhyay of Boston Children’s Hospital, will review the initial results from a pilot study supported by the FD/MAS community focused on pain in fibrous dysplasia and McCune-Albright syndrome. There will also be an opportunity for questions from attendees.

https://fdmasalliance.org/fall-2026-fd-mas-research-update/

/MAS

09/20/2026

It’s the 20th of the month, and since the mutation that leads to both and occurs on the 20th chromosome, we like to highlight special stories of courage, passion and leadership. The FD/MAS Alliance recognizes the many leaders who work tirelessly to move our mission forward. Former Board of Director members, Lauren Ruotolo and Sarah Healy, recently reconnected at the annual Forbes Power Women's Summit in NYC. This annual event brings together influential leaders to share their personal stories on how they are charting new paths toward lasting change. Thank you both for your continued passion and leadership on behalf of the FD/MAS community.