Race for a Cure for Eleanor

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Eleanor Freeman is my best friend Rachel Clarke's daughter. She is seven years old (eight in June) and was diagnosed with Rett Syndrome six years ago. Her beautiful smile and all-knowing eyes light up a room. Rachel and her husband Tim Freeman have devoted their lives to helping Eleanor and the 350,000 other girls and women who have been diagnosed. Tim is now the Chief Development Officer at the Rett Syndrome Research Trust (RSRT). Rachel and Tim's dedication, determination and drive for a cure is truly amazing and I want to continue to try and contribute what I can to this most worthy cause. What’s so exciting is that RSRT recently announced a three-year plan called Roadmap to a Cure that prioritizes gene therapy and other approaches that could cure Rett Syndrome. RSRT needs funding to do this research and to change Eleanor’s life and so many others.

I am running The Broad Street Run on Sunday, May 7th in Philadelphia, Pennsylvania. This will be my third run for Eleanor. This year is extra special because I have worked on strengthening my body the last eight months so I can be healthy and strong for others. I will put my best foot forward during this race and hope to make a difference in Eleanor's life. Please join me by donating to RSRT and help me run with my head held high during this very important race for the cure!

Averil Smith Barone

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (10)

  1. Michele Linder 
    5 months ago
  2. Cathryn Coate 
    5 months ago
  3. Stephanie Pons 
    5 months ago
  4. Ellen Cutler 
    5 months ago
  5. Alexander Gongora 
    6 months ago
  6. Megan Williams 
    7 months ago
  7. Anonymous 
    7 months ago
  8. Suzanna Friedly 
    7 months ago
  9. Carol Goldstein  
    7 months ago
  10. Jennifer Ferrell 
    7 months ago

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