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 for more information.

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The Utah family in this study has more than 7,000 descendants spanning nine generations recorded in the Utah Population Database (UPDB), a shared resource for genetics research housed at HCI. Researchers use UPDB to identify and study families that have higher than normal incidence of cancer or other disease, to analyze patterns of genetic inheritance, and to identify specific genetic mutations.

Known individuals in this one family account for 0.15 percent of all colorectal cancers reported in Utah from 1966 to 1995. Based on that percentage, researchers expected to see eight cases of colon cancer from this family among the over 5,000 reported between 1996 and 2003.

But after previous research identified this family as affected by AFAP, aggressive education and clinical intervention resulted in only one mutation carrier in the family being diagnosed with colon cancer during those years.

Preventing seven cancers may not sound like much, says Neklason. But that's seven colon cancers that didn't devastate this family. And consider that $50,000 is a conservative estimate for the cost of colorectal cancer treatment. That amounts to at least $350,000, and that means a lot for any family.

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