Katie Clapp and Mary Beth Busby, both of FRAXA Research Foundation, met with President Bill Clinton at the White House in 2001 to celebrate the signing into law of The Children’s Health Act, which funded three Fragile X Research Centers.
We in the Fragile X community have our advocacy work cut out for us to restore levels of federal funding for Fragile X research! I’m really disappointed that both of the main federal funders – the National Institutes of Health (NIH) and the Department of Defense (DOD) – have not followed through on the great initiatives that our community put in place in past years:
National Institutes of Health (NIH) Funding of The Centers for Collaborative Research in Fragile X
Almost 20 years ago, Congress established The Centers for Collaborative Research in Fragile X as part of The Children’s Health Act of 2000, after extraordinary advocacy efforts by families around the US who live with Fragile X and FRAXA Research Foundation. At that time, Fragile X was virtually unknown, and one of the Congressional staffers remarked with disbelief, “We received more letters on Fragile X than on Medicare!!”
These Fragile X research centers have been continuously funded since then, but their funding expires this spring! What will happen to all the researchers now working on Fragile X? Please let your members in Congress know that the NIH Fragile X research centers are important!
Learn more about the centers at www.fraxa.org/nih-awards-35-million-to-fragile-x-research-teams/
Department of Defense (DOD) Funding for Fragile X Research
As posted in December 2018, the DOD has dropped funding for Fragile X in 2019. The DOD has a very effective medical research program specifically funded by Congress. Fragile X syndrome has been one of the disorders included for years, but is not included in 2019. Please ask your Congressional representatives to get Fragile X back on the list for 2020!
After her son Andy was diagnosed with Fragile X, Katie, her husband Michael Tranfaglia, and a third parent founded FRAXA Research Foundation. She has served as FRAXA’s executive director since 1994. Katie has a BA in History from Harvard and an MA in Computer Science from UNC Chapel Hill. She worked as a software engineer and instructor in computer science before FRAXA. She spends lots of time with Andy on his favorite daily activities, recycling and visiting the local library.