To raise awareness about Fragile X! We need your help to “Let ’Em Know” and make that happen!
Fragile X Syndrome is a genetic syndrome that is the most widespread, inherited single-gene cause of mental impairment among boys. It results in a broad spectrum of intellectual disabilities as well as behavioral challenges, which can include ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression. Intellectual disabilities in FXS range from moderate learning disabilities to more severe intellectual disabilities. A definitive diagnosis of fragile X syndrome is made through genetic testing to determine the number of CGG repeats. Testing for pre-mutation carriers can also be carried out to allow for genetic counseling. More than 1 million individuals in the U.S. have, or are at risk of developing a Fragile X Associated disorder.
There are currently no drug treatments that show benefits specifically for fragile X syndrome, however, there are studies and research for such a drug. Until one is found, medications are commonly used to treat symptoms of attention deficit and hyperactivity, anxiety, and aggression. Supportive management is important in optimizing functioning in individuals with fragile X syndrome. Supportive management may involve speech therapy, occupational therapy, and individualized educational and behavioral programs.
Did we mention… we have prizes?!?!
We have two Grand Prizes* this year: one for the most money raised and one for the greatest number of donations. Each winner will receive one free individual conference registration and two-night hotel expenses (room and tax) to the 14th International Fragile X Conference in Garden Grove, California (July 2014)!! (Winners not attending the conference will receive a $250 Amazon Gift Card instead.) Each individual personal fundraising page under the NFXF “Let ’Em Know” event on Crowdrise from now through July 31 will automatically be eligible to win.
Want more great news? Your fundraising efforts will be doubled!!
Thanks to a very generous one-time challenge opportunity by two very special donors, Al and Melissa Blount, every dollar you raise during the NFXF Let ’Em Know 5K event for National Fragile X Awareness month will be matched dollar for dollar!!* So for every $100 you raise, the NFXF will receive a matching $100. (And you don’t even have to double how much you run or walk!) How easy and awesome is that?!?!
All donations to your personal fundraising page benefiting the NFXF on the Crowdrise are tax-deductible!