Running to Reverse Rett for Isla

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What: Raising money for Rett Syndrome Research


How: Racing a triathlon


Why: My sister has Rett Syndrome and I want it to be cured so I can play with her, and so she can do what I can do, like: bike, swim, play sports, climb trees, walk and talk.


Where: Westchester Tri - Rye, NY


When: September 21, 2019


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 (65)

  1. Joseph Giallanella 
    2 days ago
    $100
  2. Oliver Bloch 
    1 week ago
    $25
  3. Rosemary F Sotherden 
    4 weeks ago
    $50
  4. francesca bonavita 
    1 month ago
    $25
  5. Jennifer Davis  
    1 month ago
    $50
  6. Erica Gardner 
    1 month ago
    $25
  7. Lesley Bark 
    1 month ago
    $50
  8. Laura Thys-carew 
    1 month ago
    $50
  9. robert marvin 
    1 month ago
    $100
  10. Stacey Vukelj 
    1 month ago
    $100
  11. Michael King 
    1 month ago
    $50
  12. Allison Miyake  
    1 month ago
    $100
  13. Alec Thomson 
    1 month ago
    $50
  14. Elizabeth Northcutt 
    1 month ago
    $25
  15. Anonymous 
    1 month ago
    $15
  16. Mike and Julia Firer 
    1 month ago
    $25
  17. Carol Krol 
    1 month ago
    $30
  18. Deborah Basile 
    1 month ago
    $50
  19. Celeste Hopkins 
    1 month ago
    $25
  20. Lauren Demato 
    1 month ago
    $25
  21. Lisa Berlenbach Dixon 
    1 month ago
    $25
  22. Charlie & Adrea Kofman 
    1 month ago
    $100
  23. Anonymous 
    1 month ago
    $50
  24. Jo Ann Ehnes 
    1 month ago
    $25
  25. Noelle Fontaine 
    1 month ago
    $10
  26. Amanda Dundas 
    1 month ago
    $100
  27. Chloe O\'Brien 
    1 month ago
    $100
  28. Beatrice Hallac 
    1 month ago
    $50
  29. Anonymous 
    1 month ago
    $25
  30. Julie Williams 
    1 month ago
    $20
  31. Lauren Bachkosky 
    1 month ago
    $25
  32. Anonymous 
    1 month ago
    $50
  33. Kim White 
    1 month ago
    $50
  34. Adam Kaplan 
    1 month ago
    $25
  35. Samantha Schultz 
    1 month ago
    $20
  36. Krista LaPunzina 
    1 month ago
    $50
  37. Pamela Papish 
    2 months ago
    $50
  38. Lisa DeGrazia 
    2 months ago
    $25
  39. Liz Morabito 
    2 months ago
    $25
  40. Troy Tassier 
    2 months ago
    $50
  41. Andrew Hecker 
    2 months ago
    $50
  42. Erin O\'Donnell 
    2 months ago
    $50
  43. Danielle OReilly 
    2 months ago
    $100
  44. Carolyn Ramsey 
    2 months ago
    $100
  45. Virginia Skrelja Paretti 
    2 months ago
    $20
  46. Sonia Fujimori  
    2 months ago
    $25
  47. Laurent Schares 
    2 months ago
    $25
  48. Mary Byrnes 
    2 months ago
    $50
  49. Thomas Shingler  
    2 months ago
    $50
  50. Chris Valentino 
    2 months ago
    $20
  51. Kristen McMahon 
    2 months ago
    $50
  52. Catherine Sabol 
    2 months ago
    $100
  53. Todd Bilius  
    2 months ago
    $75
  54. Harmony Stern 
    2 months ago
    $25
  55. Melisa Russo 
    2 months ago
    $20
  56. Patrice Sobecki 
    2 months ago
    $100
  57. Caroline Holland 
    2 months ago
    $50
  58. Elizabeth Kolodiy 
    2 months ago
    $20
  59. Bernadette Tosti 
    2 months ago
    $250
  60. Jane Miller 
    2 months ago
    $50
  61. Brigid Doyle 
    2 months ago
    $150
  62. Andrew Moschetti 
    2 months ago
    $100
  63. Oliver Bloch 
    2 months ago
    $25
  64. Eileen Prizeman 
    2 months ago
    $25
  65. margaret galotti 
    2 months ago
    $25

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