Time Sensitive – FD/MAS Community Needed
As you may know, there are serious threats to healthcare and medical research in the US right now that directly affect the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community.
We are reaching out now with an urgent call to action for patients, caregivers, and those who love and care for them.
We have a short window before Congress leaves for its July recess, and they hold the keys to continue funding for the research that our community relies on.
Please share your concerns and comments:
To find the names of your two U.S. senators and one U.S. representative, go to the congressional directory and search using your home address. This directory lists the websites and telephone numbers for all members of Congress.
To call your legislator’s office, find their phone numbers using the congressional directory, visiting their website, or by calling the switchboard numbers for the House (202-225-3121) and Senate (202-224-3121) and asking them to patch you through to your legislator. Be sure to identify yourself as a constituent, and always be polite and professional.
Linked here is a flyer highlighting bipartisan reasons that supporting medical research for rare diseases supports American excellence.
Below is a suggested script for a phone call
Hi my name is [XXX], and I’m a constituent from [town, state].
I am calling to urge Senator/Rep. [XXX] to oppose any budget bill that cuts funding for healthcare and essential public health research. Medical research and programs improve lives and save money for individuals and the American people.
I [my child/friend/sister etc] am diagnosed with a rare bone and endocrine disease called fibrous dysplasia, McCune-Albright syndrome or FD/MAS. The FD/MAS community relies on medical research to better understand our symptoms and improve treatment options and quality of life. The research that is threatened by federal funding cuts is critical to my rare community. It also drives innovation by improving therapies and insights into bone biology that will help everyone who has bones.
I urge you to keep the US on the cutting edge of research and health:
- Maintain the National Institute of Dental and Craniofacial Research (NIDCR) as an independent institute at the NIH.
- Oppose the $18 billion in cuts to funding the National Institutes of Health.
- Oppose cuts to public health programs important to oral health and craniofacial healthcare.
Thank you for your service.
PLEASE LEAVE A MESSAGE IF THERE IS NO ANSWER AND INCLUDE YOUR FULL NAME AND ADDRESS SO THAT YOUR CALL IS TALLIED.
Without sustained funding, decades of progress in bone and endocrine diseases, including research on fibrous dysplasia and McCune-Albright syndrome (FD/MAS), could be lost.
These calls are a fast, free, and fundamental way to support the FD/MAS and rare disease communities.
If you have any questions, please reach out to me via AMcBride@fibrousdysplasia.org. Thank you for your engagement.