I traveled to Washington DC in February to speak with individual members of Congress and their legislative assistants about issues regarding Fragile X Syndrome. Along with other advocates, I met with legislative assistants from the offices of U.S. Senators Robert Casey and Arlen Specter. I also met directly with U.S. Congressman Tim Holden and Jim Gerlach.
While in Washington DC, I met with other Fragile X Advocates from all over the United States with one common goal: to secure the resources necessary to find more effective treatments and ultimately a cure for Fragile X.
My husband Luke and I are parents of two daughters with Fragile X Syndrome. Fragile X Syndrome is the leading cause of inherited mental impairment and the leading known genetic cause of autism. Individuals with the full mutation of Fragile X Syndrome can face many challenges, including mental impairment (mild to profound), sensory processing difficulties, behavior issues, developmental disabilities, and speech and language delay.
Along with advocating in Washington DC, I organize an annual Walk For Fragile X in which money raised is donated to the National Fragile X Foundation and the FRAXA Organization to help with education, awareness and funding for research.
More info on Fragile X Syndrome can be found at www.fragilex.org