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 (61)

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

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