FD/MAS Research Grants Announced
Research NewsFD/MAS Alliance is thrilled to share that two FD/MAS research grants have been awarded from the 2022 Million Dollar Bike Ride! Last spring, Team FD/MAS raised $160,000 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of several applications by the FD/MAS Alliance’s Scientific Advisory Council and the […]
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FD/MAS Global Awareness Week Social -Hosted by the PAC
FDMAS Awareness Week Research NewsJoin us Sunday, February 26th, from 2:00 – 3:30 pm EST (7:00-8:30 pm GMT) for an informal community social. We’ll start by watching a short TED Talk before we open it up to general conversation about our experiences with fibrous dysplasia, McCune-Albright syndrome (FD/MAS and life in general. It can be a powerful experience […]
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Welcoming Audrey Thurm to the Medical Advisory Council
Foundation NewsWe are delighted to announce the addition of Audrey Thurm, Ph.D., to our Medical Advisory Council. Dr. Thurm is a psychologist at the NIH and has worked closely with Medical Advisory Chair Dr. Alison Boyce to provide support to the families enrolled in the FD/MAS Natural History study that Dr. Boyce oversees at the NIH. […]
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Our In-Person Conference 2023 – Help Pick Our Theme
Foundation NewsFD/MAS Alliance is planning our long-awaited, in-person conference to be held September 8-11th, 2023. We will be meeting in the DC area and are in the early stages of planning this event. You can help us plan! Fill in this 1-question, 1-minute poll before December 15, and help pick the theme of the conference! Loading…
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With your help, we did it! Giving Tuesday 2022
Foundation NewsMany thanks to everyone who participated in Giving Tuesday 2022. As you know, our goal on Giving Tuesday was to raise $25,000, and with your help, we did it! Contributions to the Giving Tuesday campaign – Hope is on the Horizon – enable us to advance research, provide education, promote the development of evidence-based treatments, […]
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FD/MAS and Research Webinar -Postponed and Rescheduled
Research NewsPlease note: the FD/MAS and Research webinar has been postponed and rescheduled for January 13th, 2023 at 3:00 pm EST. Many community members ask: Where are we on the path to a treatment? When will I be able to take this injection as a pill? What is the focus of research on FD/MAS these days? […]
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FD/MAS Alliance’s Fiscal Year 2022 Impact Report
Foundation NewsThe FY 2022 Annual Report outlines all the accomplishments that you and our community have made possible in the last year. These pages are filled with hope and with the faces of those who know that, because of the generosity of our donors, they are not alone, and better evidence-based treatments are possible. Your generosity […]
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Becoming an Advocate for ELSA -Ensuring Lasting Smiles Act
Advocacy News UncategorizedHi, my name is Brittany Anderson. I had a tooth removed in 1997, when I was 13 years old, and the swelling never went down from the extraction. They then did a biopsy on the bone and I was diagnosed with a bone disease called fibrous dysplasia (FD). FD is a rare genetic disease that […]
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Vote for FD/MAS Community artists in RARE Artists Competition!
Advocacy News Patient SpotlightWe’re thrilled to share that not one, but TWO FD/MAS community members have been named finalists in Every Life Foundation‘s RARE Artist competition. We’re so inspired by Katie Corvelle and Christina Schulz for both their creative talent and their advocacy. Now, they need our help as the winners are selected through community vote! We encourage […]
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Take the Lead: Optimizing Palliative Care
Foundation News Treatment NewsWhile not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously. Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain. To explore this topic, we spoke to FD/MAS […]
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