Zoey’s Miracle Campaign

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Bonnie, Zoey and I need your help.  Rett Syndrome Research Trust (RSRT) has received 80% of its 3 year goal of $33 million for the Roadmap to a Cure.  As many of you know, the last 20% is often the most difficult to achieve.  With your help we raised over $7,000 again last year, but would like to achieve at least $8,500 this year, plus, Bonnie and I will match your donations up to $10,000.

It is hard to believe our wonderful granddaughter is now 5 years old.  She is doing relatively well, but we are feeling a sense of urgency because she is at the age when Rett Syndrome starts to manifest new symptoms, and a cure cannot come quickly enough.  From the one picture, you can see she has started therapeutic horseback riding this summer, and absolutely loves it.  Her face and infectious smile light up when she is told she is going to horse riding.  She rides Lacey, a special horse that does not get upset with her involuntary hand and arm movements.

RSRT and the scientific community continue to make progress.  Unfortunately, there has been a delay in the gene therapy clinical trial which we hoped would be in 2019, and now will be mid-2020.  This delay confirms the wisdom imbedded in the Roadmap to a Cure as it provides funding for multiple cure avenues, including MECP2 Reactivation, RNA Editing and Protein Replacement.

Thank you for supporting a cure for our granddaughter last year, and your consideration this year.  We are honored to have such good friends.

Dennis and Bonnie Adair

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 research to a cure 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.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (9)

  1. Matthew Freidly 
    2 days ago
  2. Jeffrey Doane 
    2 days ago
  3. Pamela Bucher 
    2 days ago
  4. Martha Petery 
    2 days ago
  5. Jeff Kemmerer 
    4 days ago
  6. Bryan Werner 
    5 days ago
  7. Charles Mackey 
    5 days ago
    2 weeks ago
  9. Matt Freidly  
    3 months ago

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