A Cure for our Granddaughter Zoey, 2018

  • Description
  • FAQ
  • Comments
  • Supporters

Rett Syndrome Research Trust (RSRT) has made good progress (50%) in year one of its 3 year goal of $33 million for the Roadmap to a Cure campaign, but getting the rest will be a challenge.  With your help, we raised $7000 last year, plus Bonnie’s and my matching amount.  Please consider helping us reach an $8500 goal this year for “A Cure for our Granddaughter Zoey, 2018”, and we will again match your donations up to $10,000.

RSRT and the scientific community are making progress.  Novartis has acquired AveXis, which is planning a Rett Syndrome gene therapy clinical trial in early 2019.  RSRT is also supporting other avenues of potential cures for this horrible disorder.  Progress is accelerating and we need to continue to help maintain this progress.

Zoey is now 4 and getting to be a big girl.  Despite being trapped in a body she cannot control, she continues to be a happy girl most of the time.  She stills needs assistance to walk, but is standing and balancing longer than before.  She has become very good at making bubbles by squeezing the trigger on her soap bubble gun while I keep her hand on the handle.  We pray Zoey doesn’t decline any further until a cure is found.

We thank you again for your generous donations last year.

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 (37)

  1. Hershey Matching Gifts 
    2 months ago
    $695
  2. John & Michele Stachowiak 
    4 months ago
    $500
  3. Michael Adair 
    4 months ago
    $100
  4. Anonymous 
    4 months ago
    $100
  5. Michael Waller 
    4 months ago
    $50
  6. Diana Attanasi 
    4 months ago
    $500
  7. John Hnatishion 
    4 months ago
    $100
  8. Bonnie & Dennis Adair 
    4 months ago
    $9,332
  9. Ron Krum 
    4 months ago
    $100
  10. Raymond & Gail Weinstein 
    4 months ago
    $50
  11. Kathy Buesking 
    5 months ago
    $100
  12. Ed & Cynthia Tootell 
    5 months ago
    $250
  13. Michael Waller 
    5 months ago
    $50
  14. Patsy Primost 
    5 months ago
    $100
  15. Sergio Flores 
    5 months ago
    $100
  16. Rob Raymond 
    5 months ago
    $50
  17. Joanne Setzer 
    5 months ago
    $50
  18. Helen Stachiotti 
    5 months ago
    $25
  19. Paul Price 
    5 months ago
    $50
  20. Brian McMahon 
    5 months ago
    $100
  21. Richard Gates 
    5 months ago
    $500
  22. Gerald Urich 
    5 months ago
    $100
  23. Suzanne Miller 
    5 months ago
    $100
  24. Pamela Bucher 
    5 months ago
    $50
  25. Mark Novis 
    6 months ago
    $100
  26. David Tacka 
    6 months ago
    $1,100
  27. William Buckfelder 
    6 months ago
    $250
  28. Charles & Kathryn Mackey 
    6 months ago
    $100
  29. Gretchen Fisher 
    6 months ago
    $100
  30. Jeff Edleman 
    6 months ago
    $250
  31. Jeffrey Doane 
    7 months ago
    $500
  32. James Steeley 
    7 months ago
    $250
  33. Bryan Werner 
    7 months ago
    $100
  34. Frank Day 
    7 months ago
    $100
  35. Anonymous 
    7 months ago
    $100
  36. martha petery 
    7 months ago
    $50
  37. Anonymous 
    7 months ago
    $100

This is a unique website which will require a more modern browser to work!

Please upgrade today!