Hope is on the Horizon

This Giving Season: Hope is on the Horizon

As the new Board President, I am hopeful about the work of FD/MAS Alliance. But there’s still so much more to do. I’m writing today to ask that you join me in making a year-end gift to help advance research, develop evidence-based treatments, provide education, and lift the voices of people with FD/MAS and their caregivers. Our goal is to raise $100,000 by the end of the year. And we have a matching gift of $25,000. Now is your chance to double your gift of any size. It will make such a big difference to those of us who struggle to find help and hope. 

The FD/MAS Alliance is a small, tight community that relies on each other for strength, resources, and resilience.  Because of FDMAS Alliance, we no longer feel alone. We know other parents who are going through this, and we know adults who have lived with FD/MAS for decades. Even though our experiences are so different, we are all part of the same spectrum. Recent discoveries may help not only us in the FD/MAS community but also people with other conditions, such as cancer, making drug development in the future more likely. We are gaining traction, and I believe that soon pharmaceutical companies may be ready to take FD/MAS on. 

Hope is on the horizon!

Please consider making your gift today. With your support, we are more resilient, and together we can advance treatment more quickly.

-Anne Corvelle
Mom of Katie
President, FD/MAS Alliance

Support the FD/MAS Alliance

Fibrous dysplasia, McCune-Albright syndrome

Fibrous Dysplasia (FD) and McCune-Albright syndrome (MAS) are rare, chronic diseases caused by a random, uninherited gene mutation on the 20th chromosome. FD presents as soft, malformed bones susceptible to fracture, chronic bone pain, and deformity. MAS is the combination of FD and abnormal hormone levels and/or rough-bordered birthmarks.

FD/MAS can surface in a sudden incident--an infant experiencing the onset of puberty or a toddler who unexpectedly breaks their femur during an otherwise routine activity. It could also be a gradual discovery, like observing a lump in the skull or a limp. Disease presentation can vary significantly from patient to patient; no two cases of FD/MAS are alike.

Due to the low prevalence and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions. Patients’ concerns may be dismissed or incorrectly diagnosed for years before a clinician with specialized expertise assesses the patient. People with FD/MAS can live full, happy lives, however, there is, as of yet, no FDA-approved treatment and no cure for the disease.

Fast Facts about FD/MAS
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Community

Often people reach out to the FD/MAS Alliance because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with their Fibrous Dysplasia/McCune-Albright Syndrome diagnosis. As a community, we go farther faster as we support each other in the journey. You are not alone.

FD/MAS Alliance relies on people just like you to fulfill our mission. Everyone can contribute something, and when enough people do, that’s when we are able to make a difference.

Events

Giving Tuesday

Giving Tuesday is a global generosity movement that started 10 years ago as a way to encourage people to focus on helping others. It’s also an online giving campaign the Tuesday after Thanksgiving that helps us all to move the needle on causes that we care about. Please think about FD/MAS Alliance on Giving Tuesday and consider starting a Giving Tuesday fundraiser to support the FD/MAS community.

FD/MAS and Research

Many community members ask: Where are we on a 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? Dr. Alison Boyce of the NIH, the Chair of our Medical Advisory Council will discuss FD/MAS and research to address many of these questions!

FD/MAS Global Awareness Week

FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2022 we celebrate the third annual FD/MAS Global Awareness Week.

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