Fragile X Advocacy

FRAXA has experience working with Congress and building relationships with government agencies to advocate for funding of Fragile X research. We invite families interested getting involved as advocates to join us. Advocates can help by becoming knowledgeable about the status of Fragile X research and contacting their representatives to voice support for Fragile X research programs. Advocates can also meet with representatives in Washington, DC or their offices in home districts.

Fragile X Advocacy Opportunities & Updates

National Institutes of Health Releases Fragile X Strategic Plan

FRAXA Program Coordinator, Elle Skala, and long time FRAXA supporter and previous Board Member, Mary Beth Busby, traveled to the National Institutes of Health earlier this week. The timing of this meeting was perfect because the National Institutes of Health (NIH) just released their long-anticipated Strategic Plan for Fragile X Syndrome, FXTAS, and FXPOI. It will guide federal Fragile X research funding for at least the next five years and open the door for continued funding of the Fragile X Research Centers of Excellence.
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NH Fragile X Awareness Day Proclaimed at July Jam Fundraiser

On July 22, 2019, the Fragile X July Jam in Derry, NH, raised over $6000 for FRAXA Research Foundation, to fund research to find effective treatments and ultimately a cure for Fragile X syndrome. Governor Chris Sununu's policy director D.J. Bettencourt read an official proclamation calling for awareness of, and research on, Fragile X.
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NIH Releases Fragile X Research Centers Funding and Strategic Plan Draft

The NIH has just posted their draft Fragile X research strategic plan for public comment. The NIH also released bridge funding for Centers for Collaborative Research in Fragile X, at the University of Massachusetts Medical School, Emory University, and the University of Texas at Southwestern.
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Federal Funding for Fragile X Research Faces Snags

We in the Fragile X community have our advocacy work cut out for us to restore levels of federal funding for Fragile X research! Both of the main federal funders - the National Institutes of Health (NIH) and the Department of Defense (DOD) are letting Fragile X research lapse!
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Department of Defense (DOD) Discontinues Fragile X Research Funding

FRAXA’s Katie Clapp learned that Fragile X, which has been an approved topic since 2010, is not on the list of approved topics for 2019 for DOD’s Peer Reviewed Medical Research Program (PRMRP). In order for Fragile X Research to be on the approved topics for the DOD’s PRMRP funding for next  year we need your help. 
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Contacting Your Member of Congress in Support of Fragile X Advocacy

Important information about how best to contact your Member of Congress in support of Fragile X advocacy, including tips, recommendations, best practices and how to get contact info for your state senators and representatives.
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HEADs UP Act Could Increase Access to Health Care

I was recently contacted by my U.S. Congressman, Seth Moulton (Massachusetts 6th District) with a request to support a new bill he’s introduced with Gregg Harper (Mississippi 3rd District). The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act, or the HEADs UP Act of 2018 was introduced on the 50th anniversary of the signing of the ADA. This legislation would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP).
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Takeaways from Fragile X Advocacy Day

In the first week of March I attended my first Fragile X Advocacy Day to meet with many of the Massachusetts delegation to Congress. While this was my first time advocating for Fragile X research, I’ve been a longtime lung cancer research advocate and have met with many of the same representatives in the past. It was a pleasure to meet with many of the families as my participation in Advocacy Day was in the spirit of “we are all in this together”.
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FRAXA Invited to The White House, Celebrating The Children’s Health Act

On short notice, Katie Clapp and Mary Beth and David Busby hurried to attend the January 4th White House ceremony celebrating the bipartisan enactment of the Children's Health Act of 2000, which boosts federal funding of research on children's diseases, including Fragile X. This was a rare, unforgettable opportunity to meet both (now, former) President and Senator Clinton in "The Blue Room," along with several members of Congress.
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