Alice’s Voice

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On May 19, 2016, Alice came into our lives and immediately became the greatest joy we could ever have imagined.  Even the worst of days can quickly turn around with a glimpse of her infectious and heart-melting smile; sweeping you away from reality and into a few moments of pure happiness.  As she grew from baby to infant to toddler, we were overwhelmed with the same pride, wonder, and elation that every parent feels.

18 months later, Alice began having trouble walking, lost verbal communication, and lost significant use of her hands.  She was globally delayed.  In June, she was diagnosed with Rett Syndrome and it was as if the world stopped.  The clinical outlook left us with little hope as we mourned what her future could have been.

Since her diagnosis, we’ve been committed to ensure Alice achieves her fullest potential.  She works hard daily with speech, physical, and occupational therapy to make the most of the body she’s trapped in.  At her core, she still remains the sweetest 2 year old girl you’ve ever known, bringing joy to everyone she meets.  And she deserves the opportunity to experience life as her peers do.

The Rett Syndrome Research Trust is focused on delivering a cure that would help Alice break free.  A cure can’t come soon enough, but the reality is cures don’t just happen.  Please help by contributing to this campaign to fund a cure for Alice.  Your donations will lead to a better future for Alice and thousands of other children with Rett Syndrome.


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 (54)

  1. Anonymous 
    2 hours ago
    $50
  2. Carol Jacoby 
    2 hours ago
    $150
  3. Andrew and Jennifer Burkemper 
    2 hours ago
    $500
  4. Taylor, Ramin, and Rumi Rezvani 
    2 hours ago
    $250
  5. Anonymous 
    4 hours ago
    $200
  6. Lynn Oveson 
    4 hours ago
    $50
  7. Ashley Schneekloth 
    4 hours ago
    $50
  8. Anonymous 
    4 hours ago
    $30
  9. Yen-Cheng Liu 
    4 hours ago
    $500
  10. Anonymous 
    5 hours ago
    $40
  11. Peter Kirkpatrick 
    5 hours ago
    $40
  12. Anonymous 
    5 hours ago
    $100
  13. Alexis Goubran-Wang 
    5 hours ago
    $100
  14. Diana Connaughton 
    6 hours ago
    $100
  15. Tonya Cooper 
    6 hours ago
    $30
  16. Marc Krull 
    18 hours ago
    $250
  17. Brian Slechta 
    18 hours ago
    $500
  18. Emily Fitzgerald 
    18 hours ago
    $100
  19. Mr. and Mrs. AuYoung 
    18 hours ago
    $100
  20. Richard Eacker 
    19 hours ago
    $500
  21. Fannie OGorman 
    20 hours ago
    $1,000
  22. Kate & Tyler DeWein 
    21 hours ago
    $250
  23. Michael Mertes 
    21 hours ago
    $100
  24. Anonymous 
    1 day ago
    $20
  25. Zachary DeCosta 
    1 day ago
    $100
  26. Melvin, Emily and Eliza Lathara 
    1 day ago
    $1,000
  27. Theodros Yigzaw 
    1 day ago
    $500
  28. Emily Boyd 
    1 day ago
    $100
  29. Craig Okada 
    1 day ago
    $1,000
  30. Anonymous 
    1 day ago
    $100
  31. Lynn/Jim Oveson/Pruitt 
    1 day ago
    $1,000
  32. John Mangones 
    1 day ago
    $500
  33. Caitlin White 
    2 days ago
    $250
  34. Alvin (and Helena) AuYoung 
    2 days ago
    $1,000
  35. KURTIS CHANG 
    2 days ago
    $1,000
  36. Ian Steiner 
    2 days ago
    $250
  37. Terry Steiner 
    2 days ago
    $50
  38. Cyrus, Anna & Raina Press 
    2 days ago
    $1,000
  39. Shubham Mukherjee 
    2 days ago
    $1,000
  40. Kathie Phan 
    2 days ago
    $100
  41. Raj Sengupta 
    2 days ago
    $1,000
  42. Anonymous 
    2 days ago
    $250
  43. Jimmie Ye 
    2 days ago
    $250
  44. Edward Liao 
    2 days ago
    $1,000
  45. Kendra O\'Brien 
    2 days ago
    $100
  46. Carrie Foote 
    2 days ago
    $250
  47. Chu Family 
    1 week ago
    $10,000
  48. JP & MD Paquette 
    1 week ago
    $300
  49. Martha Savage 
    2 weeks ago
    $500
  50. Kathleen Briones 
    2 weeks ago
    $100
  51. Sarah Pruitt 
    2 weeks ago
    $100
  52. Cecile Pitts 
    2 weeks ago
    $250
  53. Lynn/Jim Oveson/Pruitt 
    2 weeks ago
    $2,000
  54. Kelsey & Allen Chu 
    2 weeks ago
    $10,000

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