Contact: Jeffrey Cohen
Director of Government Affairs & Advocacy
(313) 806-1190

Families, Scientists Rally in DC to Raise Awareness of Fragile X Gene Research & Funding

(Washington, DC, FEB. 28)—As scientists uncover the precise links between autism and the Fragile X gene, potential treatments to reverse many of the core symptoms of both autism and Fragile X syndrome (FXS) are moving closer to reality. Nationwide clinical drug trials are already underway and are showing significant success in reversing symptoms of severe social impairment and behavioral issues in participants with autism and FXS, giving hope to families and individuals with these conditions that additional treatments may be on the horizon.

“For the first time, we have hope that medicines are within sight that will allow many individuals with Fragile X syndrome and autism, who have severe social impairments, to be able to function and interact with others in society,” said Robert Miller, executive director of the National Fragile X Foundation.

While autism is the more commonly known of the two conditions, Fragile X syndrome is the most common known genetic cause of autism and autism spectrum disorders. It is also the most common cause of inherited intellectual disability. FXS can cause learning and behavioral disorders that can range from mild to severe. New scientific research has further established the interconnectivity between these two conditions.

The enthusiasm for these new discoveries in the genetic causes of autism is tempered by the reality that federal budget constraints may jeopardize the recent significant scientific gains. Hundreds of advocates, including researchers and families of individuals with FXS and autism, will be in Washington on March 5-6 to help raise public and congressional awareness of the break-through research’s potential for treatment.

“With actual treatments for key symptoms of autism and Fragile X syndrome in the testing phase, the impact of recent scientific discoveries cannot be underestimated—and should not be starved of support just as they are coming to reality,” Miller said.

The National Fragile X Foundation, founded in 1984, is a 501(c)(3) nonprofit organization that provides informational, referral and emotional support; educational and awareness materials and activities; support for research including the translation of science into new and improved treatments; and legislative advocacy. More information is available at