BENEFITING: National Fragile X Foundation
ORGANIZER: Kansas Fragile X Group
EVENT: NFXF LET 'EM KNOW 5K 2014
"Team Rhein & Rhett are proud to support both the Kansas Fragile X Group and the National Fragile X Foundation’s “Let ‘Em Know 5K” event! We hope you will join us to raise awareness and money for Fragile X! We are a group of people that love two boys named Rhein and Rhett Murphy, who happen to be affected by Fragile X Syndrome. Fragile X affects our lives in a variety of ways. Rhein & Rhett want nothing more than to "fit in" and have friends. We strive to make life as "normal" as possible for them. The boys have an amazing support system that has become like a "family" to us, heck some of them are family!!! Early in our diagnosis I said "If 1 out of every 250 women is a carrier of Fragile X, then AT LEAST 1 out of every 250 women should KNOW about it." we still believe that, people can't understand something they have never even heard of. We are just one of many families who are affected by Fragile X, and I would like to not hear "Fragile What?" everytime I mention it! Help us "Let 'em know" by donating to someone on our team!
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.
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!