On Sunday, January 20, 2013, I will be running the Bermuda Marathon to raise money to support research to find a cure for Rett Syndrome.
What is Rett Syndrome?
- Debilitating neurological (movement) disorder that predominantly affects females.
- Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.
- Caused by a single gene mutation that leads to underproduction of an important brain protein.
- The most severe form of autism.
- The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
- Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
- As prevalent as Cystic Fibrosis, ALS and Huntington's.
- Another little girl is born with Rett Syndrome every 90 minutes.
- Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.