What is Rett Syndrome?


Quick Facts

  • A debilitating neurological disorder
  • Predominantly affects females
  • As prevalent as Cystic Fibrosis, ALS and Huntington's
  • Baby girls lose acquired skills between 1 and 3 years old
  • Caused by a single gene mutation that leads to underproduction of an important brain protein
  • Most girls with Rett cannot speak, walk or use their hands 
  • Another little girl is born with Rett Syndrome every 90 minutes
  • Potentially REVERSIBLE through reintroduction of the underproduced protein
  • Girls with Rett function mentally at a much higher level than previously thought

 


Rett Syndrome is a debilitating neurological disorder that predominantly affects females*. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.

Girls are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands, and depend on their families for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to their recovery. 

Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.

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.

“Rett Syndrome has been reversed in the lab and could be one of the first childhood neurological disorders to be cured. We are hopeful Rett research could also lead the way to treatments for millions of others suffering from these types of disorders.” 

Aleksandra Djukic, MD PhD
Director, Tri-State Rett Syndrome Center
Associate Professor of Neurology and Pediatrics
Montefiore Medical Center
Albert Einstein College of Medicine

 

*While Rett Syndrome mainly affects females, we do have some amazing boys we know who are battling Rett as well. We open our arms to them and extend a flower. We may be pink and girly and all that, but there's enough love to go around!

This organization has gone above and beyond what I ever expected an organization to do. It has helped my daughter and my family in so many ways. They are always promoting events and making us feel included and in the loop with events and allowing us to participate in them. So grateful for Girl Power 2 Cure and the blessing it has been in our lives.

— Whitney Cooley