What is Rett Syndrome?

QUICK FACTS:

  • 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 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.


There are just a handful of disorders that predominantly affect females. Breast cancer is the most prevalent. Rett Syndrome is just as devastating, and affects a potential one in 5,000 girls.

Condemned to an entire lifetime of struggles, these girls have been robbed of their ability to speak, walk, crawl, use their hands. They depend on others for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.

Today, there is no cure. But Rett Syndrome is CURABLE!

Amidst the mass confusion going on within their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to their recovery.

Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top-notch institutions are delving into Rett Syndrome.

Why?

Not only will their work help thousands of girls and women worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.

In essence, our girls may hold the key to a cure for millions of people suffering from dozens of disabilities.

 


 

Funds we raise to dedicate to research are sent to the Rett Syndrome Research Trust. Check out our research page to learn more about the projects were are helping to fund.