Letter: Fragile X syndrome

In the past year, ground-breaking research has uncovered precise genetic links between autism and Fragile X syndrome giving families like ours hope that treatment for many of the core symptoms of both conditions is on the horizon. New drugs currently in clinical trials have been shown to have a significant effect on reducing the symptoms of severe social impairment in people with autism or Fragile X syndrome. Many families in Massachusetts are participating in these exciting trials. This has been my seventh year advocating for Fragile X and our son Patrick. Our daughter’s third year in D.C., being the “voice” for her brother.. Reducing repetitive behaviors and improving social skills would allow our family members to lead more independent lives.

While most people know about autism and autism spectrum disorders, not as many are aware of Fragile X syndrome. Fragile X is closely related to autism, is the most common inherited cause of intellectual disabilities and is the most common genetic cause of autism.

It is imperative that the advancements made through these ground-breaking research projects continue to be built upon. We have just returned from Washington, D.C., where we met with members of Congress to raise awareness of Fragile X, this breakthrough research and its potential. Wise stewardship of federal research dollars would encourage continued investment and expand the scope of research into the links between Fragile X and autism.

The promise of this research gives hope to many of us in Massachusetts who have family members with autism and Fragile X syndrome that independence and social acceptance are within reach in our lifetime.



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