The FD/MAS Community Must ACT NOW.

Don’t Wait: Speak up TODAY for more federal research funding for FD/MAS.

Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) researchers are ineligible to apply for research funding from the Peer Reviewed Medical Research Program, one of the Congressionally Directed Medical Research Programs at the Department of Defense.

People living with FD/MAS–alongside the friends, family, healthcare practitioners, and researchers who care about them–are fighting to change that RIGHT NOW. There needs to be MORE federal research funding to study FD/MAS.

We need you to tell your Senator to support FD/MAS research. Let’s #CureFDMAS!

Ways to help

1. Call 202-224-3121 to leave a message your Senator. That number will take you to the United States Capitol switchboard, where your call can be directed to your specific Senators. See below for a sample script. (3 minutes per Senator)
2. Complete this form to let us know what other actions we can engage you in, like coordinated social media actions, sending physical letters or participating in in-person meetings. (2 minutes)
3. Click here to send a message to your Senator, urging them to include FD/MAS in the Peer Reviewed Medical Research Program . (1 minute)

 

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Call Script

Hello, I am *Name* from *Town/City, State*.

I am calling you today as a constituent of yours that is personally affected by the disease fibrous dysplasia/McCune Albright Syndrome (FD/MAS). *Briefly describe your connection to FD/MAS*

FD/MAS  is a genetic disease that causes a wide range of issues. Among the serious symptoms, this disease causes a scar-like bone tumors called fibrous dysplasia to form instead of healthy bone in one or more parts of the skeleton. The tumors are misshapen, very prone to fractures and chronic bone pain, and can ultimately result in loss of mobility, sight, hearing, and other major forms of disability. There is no cure for FD/MAS, and no treatments that have been found to reverse, stop or slow the progression of the bone disease.

I am calling you today to ask for your help in the fight against FD/MAS. There is an important, congressionally controlled research program, called the Peer Reviewed Medical Research Program. It’s part of the Department of Defense’s Congressionally Directed Medical Research Program. Researchers who want to study and cure FD/MAS aren’t eligible to apply for this funding, and it’s time for that to change.

Adding FD/MAS to this research program wouldn’t just help families like mine. Because of the specifics of the biology of FD/MAS and what causes it, research on FD/MAS is an opportunity to make progress on other bone conditions that are important to the military, like

• Fractures
• Blast-induced bone problems
• Chronic bone pain.
• Osteoporosis
• Osteoarthritis

Help FD/MAS researchers access the resources they need to make progress. Your office can support families like mine that are touched by bone disease. In your individual letter to the Defense Appropriations Subcommittee, please ask that the Subcommittee add FD/MAS to the Peer Reviewed Medical Research Program of the Congressionally Directed Medical Research Program. 

If you have questions about FD/MAS or why FD/MAS research would benefit the military, you can also contact the Fibrous Dysplasia Foundation at info@fibrousdysplasia.org.

Thank you for listening.

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About FDF and Advocacy

There are many ways that the Fibrous Dysplasia Foundation practices advocacy on behalf of persons with fibrous dysplasia, McCune-Albright syndrome and related bone diseases. The FD Foundation involves itself in efforts to educate federal and state officials about:

• the importance of funding basic research,
• the need to mandate access to empirically-supported treatments for the diverse symptoms of these diseases, and
• why rare disease clinical trials are critical to test medications and new treatment regimes.

Are you passionate about change through public policy, please contact us and introduce yourself!

Past Successes

April 2018 – Executive Director Deanna Portero is named Co-Chair of the EveryLife Foundation Public Policy Working Group.

February 2018 – Executive Director Deanna Portero addresses the Rare Disease Congressional Caucus on the urgent need for additional incentives for rare disease drug development. Watch her presentation here.

February 2017 – Fibrous dysplasia was one of just thirteen diseases mentioned in the Senate resolution designating February 28, 2017 as Rare Disease Day. Fibrous Dysplasia Foundation becomes an official Rare Disease Day partner.

November 2016 – In order to take more ownership and responsibility for strong NIH funding, Fibrous Dysplasia Foundation joins the Friends of the National Institutes of Dental and Craniofacial Research and the National Institute of Arthritis and Musculoskeletal and Skin Diseases Coalition.

March 2010 – The FD Foundation gains 13 Champions. Led by Senator John Kerry and Congressman James McGovern of Massachusetts, six senators and 7 congressional representatives sent a letter to the head of the NIH, Dr. Francis Collins in March, 2010, urging the NIH to continue funding research on rare diseases like FD/MAS.

April 2010 – The FD Foundation joins the National Organization of Rare Diseases.