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 threaten Fragile X research, putting critical studies and future treatments at risk. Help us urge Congress and the NIH to act now.
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!
FRAXA Volunteer Participates in Peer Reviewed Medical Research Program for the Department of Defense
FRAXA advocate Jennifer Frobish served as a reviewer for the Department of Defense’s medical research program, evaluating Fragile X–related proposals.
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.
FRAXA Supports Increased Funding for NICHD
FRAXA has joined the Friends of NICHD coalition, urging increased government funding for research into Fragile X and related conditions.
Centers for Collaborative Research in Fragile X Receive $25 Million Over Next 5 Years
NIH announced $25 million to fund three new Centers for Collaborative Research in Fragile X, supported by NICHD, NIMH, and NINDS.
National Institutes of Health Releases Fragile X Strategic Plan
FRAXA’s Elle Skala and supporter Mary Beth Busby visited NIH as the new Strategic Plan for Fragile X was released, shaping federal research priorities for years.
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.
Federal Funding for Fragile X Research Faces Snags
Federal support for Fragile X research is declining. NIH and the Department of Defense are reducing investment, making advocacy more important than ever.