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
Urgent Action Needed: Help Secure NIH Funding for Fragile X Research
NIH funding delays are threatening Fragile X research, putting critical studies and future treatments at risk. FRAXA Research Foundation and NFXF are urging Congress and the NIH to act now. Learn how you can help secure funding for Fragile X research.
Read More »
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!
Read More »
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).
Read More »
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.
Read More »
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.
Read More »
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).
Read More »
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.
Read More »
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.
Read More »
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!
Read More »