BENEFITING: National Fragile X Foundation
ORGANIZER: Rhein Rhett's Runners
EVENT DATE: Sep 21, 2013
Christina Murphy wrote -
Join our team! Come out to show your support for Rhein, Rhett and the many other kids affected by Fragile X Syndrome, help us participate in the Kansas FX Group's 3rd Annual Walk for the Faces of Fragile X!
I am a stay-at-home mother of 3 boys. I am a carrier of Fragile X and my 2 oldest boys (Rhein and Rhett, age 15 and 11) have Fragile X Syndrome. It affects our lives in a variety of ways. My children realize they are different and what they want more than anything, just like any child, is to fit in, have friends, and be like all the other kids. So, that is what we strive for, making life as “normal” as possible for them. The Kansas FX Group has allowed us to meet other families in the area that are affected by Fragile X, and we would LOVE for you to meet them too!
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.
Shawnee Mission Park 7900 Renner Road, Shawnee, KS Shelter No. 2
Registration begins at 9 am,
Walk starting at 10 am followed by lunch, silent auction and more!
Activities include: live music and entertainment, a silent auction, a scavenger hunt for kids, a magician, face painting and more!
The funds raised will go to support the Kansas FX Group's year-long efforts which include scholarship programs, educational seminars and family social events.
Thank you for supporting our mission which is to unite families challenged with Fragile X, to enrich lives through emotional and educational support, promote public and professional awareness, and to advance research toward improved treatments and a cure for Fragile X.