Research on new treatments for FXS to be presented at International Fragile X Conference

Accelerated research findings leading to potentially significant new treatments for fragile X syndrome (FXS) will be presented to nearly 1,000 family members and professionals at the 12th International Fragile X Conference in Dearborn July 21-25.

Nearly 200 speakers — many from the world's leading research universities — will describe the latest treatments for symptoms related to the mutation of the Fragile X gene and powerful new medications being researched. Multiple early trials are under way of drugs that show promise for treating the core causes associated with FXS, the world's leading known cause of inherited intellectual disability (formerly referred to as mental retardation). FXS is also the most common known, single gene cause of autism. Scientists are studying FXS as a possible model for better understanding the role that genes play in autism. FXS today affects approximately 100,000 Americans. Another estimated one million are carriers of the Fragile X mutation and at risk of passing it on to their children.

Thirty conference topics will include academics, assisted communication, the relationship between autism and FXS, financial planning, behavior and medical interventions, and occupational and speech therapy. There will also be an increased number of topics focusing on the other Fragile X-associated Disorders such as fragile X-associated tremor/ataxia syndrome (FXTAS), a Parkinson's-like condition causing tremor, balance and memory problems in adults, and fragile X-associated primary ovarian insufficiency (FXPOI), a condition that can result in reproductive problems for women including premature menopause.

"The biggest benefit to attending the conference is the opportunity to connect with other families, feel supported, learn new techniques, behavioral interventions and coping strategies, and discover the latest shared research by some of the world's leading Fragile X clinicians, educators and psychologists," said Linda Sorensen, associate director, National Fragile X Foundation.

The biennial international conference will include a celebration of National Fragile X Awareness Day on July 22, proclaimed this day by Congress in 2000.