Boost for Fragile X research

Jan 3 2008

The 2008 Omnibus Budget, signed by President George Bush on Monday, includes $1,860,000 for the CDC Fragile X Public Health Initiative, more than double the current program funding level.

Also included in the bill are Congressional directives to the NIH to fund translational research and commence drug trials of promising new therapies.

"Congress has acknowledged the importance of Fragile X research to unlocking the secrets of Autism and other neurodevelopmental disorders," said Jeffrey Cohen, past president, The National Fragile X Foundation (NFXF). "This will accelerate the pace of research toward improved treatments leading to an ultimate cure, increase awareness and make more services available to more families impacted by Fragile X."

Fragile X Syndrome is the most common cause of inherited cognitive impairment and the most common known cause of autism. As many as 1 in 130 women may carry the Fragile X gene premutation. Nearly 1.5 million Americans are impacted by the condition in its various forms.

The funding increases signed into law by the President came about as a result of grass roots advocacy by families touched by Fragile X who each year travel to Washington for a NFXF sponsored Advocacy Day. "Funding for many genetic conditions experienced significant cuts, but Fragile X funding was increased," said Randi Hagerman, medical director, MIND Institute, and director, Fragile X Research and Treatment Center, University of California, Davis. "Families spoke out and Congress responded, that's the way the system should work." Earlier this year a team led by Hagerman and her husband Paul, also a researcher at UC Davis, was awarded a record breaking $21.8 million by the NIH to study Fragile X and FXTAS (pronounced fax-tas), a related neurodegenerative disorder first identified by the Hagerman team that has features of both Parkinson's and Alzheimer's.

A dedicated group of parents and professionals established the National Fragile X Foundation in 1984. Today, the organization seeks to unite the Fragile X community, to enrich lives through educational and emotional support, to promote public and professional awareness, and to advance research toward improved treatments and a cure for Fragile X syndrome. Visit fragilex.org for more information.