Urgent Action Needed: Help Secure NIH Funding for Fragile X Research

NIH funding delays threaten Fragile X research, putting critical studies and future treatments at risk. Help us urge Congress and the NIH to act now.

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Help Direct Millions in Fragile X Research Funding – DOD Seeks Reviewers

The DOD’s Fragile X syndrome research program seeks reviewers to help evaluate funding applications. No science background needed—apply by March 7!

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FRAXA Volunteer Participates in Peer Reviewed Medical Research Program for the Department of Defense

FRAXA nominated advocate, Jennifer Frobish, recently evaluated research applications submitted to the Peer Reviewed Medical Research Program (PRMRP) of the Congressionally Directed Medical Research Programs (CDMRP).

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Fragile X Syndrome and Air Travel

If you wish to participate in a letter writing campaign you can copy the letter below and start sending it the CEOs listed at the bottom of the page.

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FRAXA Supports Increased Funding for NICHD

Within the past month, FRAXA Research Foundation has signed on to join the Friends of of National Institute of Child Health and Human Development (NICHD), asking for an increase government funding to research disorders such as Fragile X syndrome.

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Centers for Collaborative Research in Fragile X Receive $25 Million Over Next 5 Years

National Institutes of Health (NIH) has announced funding for three Centers for Collaborative Research in Fragile X. The centers will receive $25 million over the next 5 years. Funding for the centers comes from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute of Mental Health (NIMH), and the National Institute of Neurological Disorders and Stroke (NINDS).

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Elle Skala, Tracy King, Christie Rogers, Mary Beth Busby

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

The Fragile X July Jam in Derry, NH raised $6,000 for FRAXA! Gov. Sununu’s office also issued a proclamation for Fragile X awareness.

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President Clinton celebrating Children's Health Act

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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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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Kimberly Huber, Ph.D., FRAXA Investigator

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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President Clinton celebrating Children's Health Act

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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