Advocacy Archives

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

March 13, 2025

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

February 17, 2025

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

August 26, 2022

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

August 19, 2021

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

April 6, 2021

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

October 6, 2020

NIH announced $25 million to fund three new Centers for Collaborative Research in Fragile X, supported by NICHD, NIMH, and NINDS.

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

National Institutes of Health Releases Fragile X Strategic Plan

November 15, 2019

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

July 26, 2019

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.

President Clinton celebrating Children's Health Act

Federal Funding for Fragile X Research Faces Snags

February 21, 2019

Federal support for Fragile X research is declining. NIH and the Department of Defense are reducing investment, making advocacy more important than ever.

Contacting Your Member of Congress to Advocate for Fragile X Research

December 1, 2018

A quick guide to contacting Congress for Fragile X advocacy—includes tips, recommendations, and how to look up your senators and representatives.

Takeaways from Fragile X Advocacy Day

March 29, 2018

At my first Fragile X Advocacy Day, I met with Congress and families, advocating together for research and hope.

Kimberly Huber, Ph.D., FRAXA Investigator

NIH Awards $35 Million to Three Fragile X Research Teams

September 23, 2014

NIH is investing $35M in three Fragile X Research Centers. All teams have been funded by FRAXA and will now receive over $2M annually for five years.

FRAXA Invited to The White House, Celebrating The Children’s Health Act

February 8, 2001

Katie Clapp and Mary Beth & David Busby attended a White House ceremony celebrating the Children’s Health Act, boosting federal Fragile X research funding.