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
Contacting Your Member of Congress to Advocate for Fragile X Research
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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Takeaways from Fragile X Advocacy Day
At my first Fragile X Advocacy Day, I met with Congress and families, advocating together for research and hope.
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NIH Awards $35 Million to Three Fragile X Research Teams
The National Institutes of Health has just announced new awards of $35 million over five years to support three Centers for Collaborative Research in Fragile X. Investigators at these centers will seek to better understand Fragile X-associated disorders and work toward developing effective treatments. All of these scientists have been funded for years by FRAXA Research Foundation, and now each team will receive over $2 million per year for five years!
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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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