FDMAS Alliance

06/15/2026

Look at these world travelers, seeing the sights on land and by sea! Come chat with them about traveling with MAS/FD (it rhymed! I couldn't help myself!).

Our JUNE FD/MAS Alliance Monthly Community Meet-Up will by on 24th of June at 7:00 pm ET (note--it's on the hour and not the half hour, like most of our calls!)

We hope you'll join Nikki and William to share tips and stories about traveling with a rare, metabilic bone disease!

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

06/09/2026

is a NUMBERS game. If FD/MAS Alliance has taught me anything, it's that an ORGANIZED community can make a HUGE difference.

In past years, my goal has always been 100 supporters.

This year, we started late. We were focused on identifying our community's PRIORITIES for research and well-being advancments. We have a strategy and we have NO regrets about making time to focus on that.

NOW, we need you to show up and help us stand strong for Team FD/MAS.

Right now, we have 27 supporters. Will you help us reach 50?

A gift at any level counts. Let's work towards our priorities for research, advocacy, and education to support the communities vision of a future where everyone with FD/MAS can thrive!

www.tinyurl.com/teamfdmas2026

06/05/2026

Join us JUNE 24th at 7:00 PM ET (11:00 PM GMT) for our . The theme is TRAVEL and we'll have two of the savviest travelers--Nikki Deeley Cannings and William Romero-- from the Patient Advisory Council with us to share their tips on traveling with a .

Please note that this is a schedule change (the 4th Thursday and on the hour, not the half hour) for this meet-up.

You can join to hear travel stories, ask questions, and share your experiences! Register here: https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

06/04/2026

In case your day needed a little dose of sunshine: check out these brand new bronze statues of youth baseball players with mobility aids that were unveiled at the West Brownsville Little League park, with thanks to the Valley Adaptive Sports League!

We have it on good authority that someone from the community (diagnosed with ) recited the pledge!! We love to be seen and to celebrate activities that make us feel powerful, like adaptive sports!

(Courtesy: Brownsville Mayor John Cowen Jr./Facebook)

06/03/2026

It's ! Adaptive, stationary, imaginary, bedazzled--we love to see them all!

BUT right now we're MOST enthusiastic about Team FD/MAS and the Million Dollar Bike Ride! Bikes: Optional

You can also:
*walk (and chat with fellow team members)
*volunteer (to pass out race packets and snacks)
*DONATE to show your support for Team FD/MAS!

We now have 20 donors supporting Team FD/MAS and our work to advance research, advocacy, and education for the FD/MAS community. Will you help us get to 50?

www.tinyurl.com/teamfdmas2026

06/02/2026

I am a single mother of two daughters. One of them, Katie, has McCune-Albright Syndrome, but that diagnosis has changed *all* of our lives.

I cannot face this disease alone, and I refuse to let my daughters believe that nothing can change. Will you join me?

Email from FD/MAS Alliance Support Team FD/MAS at the 2026 Million Dollar Bike Ride! Greetings! I am a single mother of two daughters. One of them, Katie, has McCune-Albright Syndrome, and that diagno

05/29/2026

Here's the truth: $10 donations will not cure FD/MAS, but they can demonstrate that the power of community. In rare disease, small actions and community organizing become a powerful way to demonstrate that the NEED is there.

That's why # of donors can be AS IMPORTANT as $ raised. It's a rare disease numbers game that's built on dedicated community champions showing up and saying this is IMPORTANT.

has a great track record of making a BIG impact in and research. Let's keep showing up until the research reaches our lives.

Will you give to support Team FD/MAS? Every donation counts! WWW.tinyurl.com/teamfdmas2026

05/24/2026

Have you ever wondered if Team FD/MAS is actually supporting research progress?

At the FD/MAS Research Priorities Workshop, researchers shared their ongoing work on understanding and treating --their optimism in future treatments was palpable, and so many of them cited the seed grants, organized meetings, and collaboration opportunities that Team FD/aMAS and the FD/MAS Alliance provided as CRITICAL.

We have a track record of BIG wins, and after the Research Priorities Workshop, we have a road map of where we want to head next.

Your gift to Team FD/MAS this year is a vote of confidence in our community priorities and an investment in the work to bring those priorities to life. www.tinyurl.com/teamfdmas2026

05/19/2026

TOMORROW NIGHT: May 20th, 7:30 PM EDT FD/MAS LIVE in CONCERT! --Or --in the case of the first photo, at the Art Museum!

We’ll be talking about attending live events (like concerts and theater) with a rare, chronic bone condition, including tips for navigating crowded venues with a mobility device OR an invisible illness that may make the arts harder to appreciate!

Sarah will share stories of her experiences, some resources she’s used, and some ways to plan for a great event!

Register to attend on our website! https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/

05/16/2026

Join FD/MAS and disability advocate May’s FD/MAS Alliance Monthly Community Meet-Up (May 20th, 7:30 pm ET).

We’ll be talking about attending live events (like concerts and theater) with a rare, chronic bone condition, including tips for navigating crowded venues with a mobility device OR an invisible illness that may make the arts harder to appreciate!

Sarah will share stories of her experiences, some resources she’s used, and some ways to plan for a great event!

register (for free) on our website..and come hang out!
https://fdmasalliance.org/get-involved/fd-mas-alliance-monthly-community-meet-up/