A Cure for our Granddaughter Zoey, 2018

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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 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 (29)

  1. Ron Krum 
    6 days ago
    $100
  2. Raymond & Gail Weinstein 
    1 week ago
    $50
  3. Kathy Buesking 
    2 weeks ago
    $100
  4. Ed & Cynthia Tootell 
    2 weeks ago
    $250
  5. Michael Waller 
    3 weeks ago
    $50
  6. Patsy Primost 
    3 weeks ago
    $100
  7. Sergio Flores 
    4 weeks ago
    $100
  8. Rob Raymond 
    4 weeks ago
    $50
  9. Joanne Setzer 
    4 weeks ago
    $50
  10. Helen Stachiotti 
    4 weeks ago
    $25
  11. Paul Price 
    4 weeks ago
    $50
  12. Brian McMahon 
    4 weeks ago
    $100
  13. Richard Gates 
    4 weeks ago
    $500
  14. Gerald Urich 
    4 weeks ago
    $100
  15. Suzanne Miller 
    4 weeks ago
    $100
  16. Pamela Bucher 
    1 month ago
    $50
  17. Mark Novis 
    2 months ago
    $100
  18. David Tacka 
    2 months ago
    $1,100
  19. William Buckfelder 
    2 months ago
    $250
  20. Charles & Kathryn Mackey 
    2 months ago
    $100
  21. Gretchen Fisher 
    2 months ago
    $100
  22. Jeff Edleman 
    2 months ago
    $250
  23. Jeffrey Doane 
    2 months ago
    $500
  24. James Steeley 
    2 months ago
    $250
  25. Bryan Werner 
    3 months ago
    $100
  26. Frank Day 
    3 months ago
    $100
  27. Anonymous 
    3 months ago
    $100
  28. martha petery 
    3 months ago
    $50
  29. Anonymous 
    3 months ago
    $100

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