Alice’s Voice

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The success of this campaign has truly touched us.  We never expected the magnitude of overwhelming generosity and support we've received thus far from friends and family.  We decided to raise the bar to $75,000 so we have an even bigger impact on Alice’s life and on the lives of the 350,000 other girls and women with Rett Syndrome.


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 (142)

  1. Linda Gaeth 
    3 days ago
    $100
  2. Sandra Matusiak 
    4 days ago
    $500
  3. Dan Hagg 
    5 days ago
    $500
  4. Anonymous 
    6 days ago
    $50
  5. Janet Spates 
    6 days ago
    $50
  6. Troy Wallin 
    6 days ago
    $100
  7. Shelby Bowerly 
    7 days ago
    $75
  8. Thomas J Williamson 
    1 week ago
    $100
  9. Alan Barker 
    1 week ago
    $50
  10. Scott Allan 
    1 week ago
    $500
  11. Nancy & John Ringer 
    1 week ago
    $50
  12. Susan Bigcraft 
    1 week ago
    $250
  13. Martha Mitchell 
    1 week ago
    $50
  14. Douglas Mitchell 
    1 week ago
    $50
  15. Jeffrey Edelman 
    1 week ago
    $100
  16. Kathryn Hanavan 
    2 weeks ago
    $100
  17. Dorothy & Alex Reisbord 
    2 weeks ago
    $500
  18. Alexandra Matarrese 
    2 weeks ago
    $250
  19. Anonymous  
    2 weeks ago
    $100
  20. Rachel McMahon 
    2 weeks ago
    $100
  21. Jen Smith 
    2 weeks ago
    $100
  22. Sarah Pruitt 
    2 weeks ago
    $500
  23. Susan Cota 
    3 weeks ago
    $50
  24. Drew Hannon 
    3 weeks ago
    $25
  25. Lisa Spelman 
    3 weeks ago
    $100
  26. Laura House 
    3 weeks ago
    $125
  27. Marnie Kumakura 
    3 weeks ago
    $250
  28. Siobhan Stoffregen 
    3 weeks ago
    $100
  29. kevin mcclaughry 
    3 weeks ago
    $50
  30. Deepti Gupta 
    3 weeks ago
    $100
  31. Lynn/Jim Oveson/Pruitt 
    3 weeks ago
    $1,000
  32. Andrea Baird 
    3 weeks ago
    $25
  33. Debra Fish 
    3 weeks ago
    $100
  34. Sally L Judson 
    3 weeks ago
    $100
  35. Anonymous 
    3 weeks ago
    $250
  36. Christopher Mathias 
    4 weeks ago
    $100
  37. Tom Souhlas 
    4 weeks ago
    $200
  38. Deena Alshatti 
    1 month ago
    $100
  39. becki bosley 
    1 month ago
    $100
  40. David Domreis 
    1 month ago
    $500
  41. Anonymous 
    1 month ago
    $100
  42. Jasper Shen 
    2 months ago
    $500
  43. Nimaljeet Tarango 
    2 months ago
    $250
  44. Mary Bierwirth 
    2 months ago
    $100
  45. Abby Hendler 
    2 months ago
    $100
  46. Terry Steiner 
    2 months ago
    $50
  47. Anonymous 
    2 months ago
    $250
  48. Darcy Hickey 
    2 months ago
    $100
  49. jennifer rohner 
    2 months ago
    $25
  50. Anonymous 
    2 months ago
    $50
  51. Anonymous 
    2 months ago
    $1,000
  52. John Domreis 
    2 months ago
    $500
  53. Peter Reed 
    2 months ago
    $50
  54. Shelley Chen 
    2 months ago
    $1,000
  55. Ann Fuller 
    2 months ago
    $50
  56. Christopher Freeman 
    2 months ago
    $100
  57. Reema Sareen  
    2 months ago
    $50
  58. Lindsay MacLarty 
    2 months ago
    $1,000
  59. David Biermann 
    2 months ago
    $100
  60. Sadie Johnson 
    2 months ago
    $1,000
  61. Nicole VanDeventer 
    2 months ago
    $100
  62. Ron Johnson 
    2 months ago
    $250
  63. Anonymous 
    2 months ago
    $250
  64. Steve and Rosalie Johnston 
    2 months ago
    $75
  65. Kristina Ritzman 
    2 months ago
    $50
  66. Heather Mayer 
    2 months ago
    $100
  67. Rebekah Leslie-Hurd 
    2 months ago
    $500
  68. Michelle Sebot 
    2 months ago
    $1,000
  69. Terry Ferrucci 
    2 months ago
    $250
  70. Anirban Bhattacharyya 
    2 months ago
    $100
  71. Michael Wnuk 
    2 months ago
    $500
  72. Anne Freeman 
    2 months ago
    $500
  73. Kevin Rompala 
    2 months ago
    $100
  74. Sarah Parks 
    2 months ago
    $50
  75. Lauren Scher 
    2 months ago
    $50
  76. Carl Press 
    2 months ago
    $100
  77. Paola Landau  
    2 months ago
    $20
  78. Trisha Neuman 
    2 months ago
    $40
  79. Lulu and Clement Kam 
    2 months ago
    $250
  80. Paul Bergman 
    2 months ago
    $100
  81. Meg Guerreiro 
    2 months ago
    $50
  82. Jennifer Lu 
    2 months ago
    $2,500
  83. Kartik Lamba 
    2 months ago
    $1,000
  84. Erinne & Jordan Dilworth  
    2 months ago
    $500
  85. Tal Cohen 
    2 months ago
    $118
  86. Kacey Turner 
    2 months ago
    $50
  87. Matia, Tom and Mara Kelly Patterson  
    2 months ago
    $100
  88. Satya Buch 
    2 months ago
    $20
  89. Anonymous 
    2 months ago
    $50
  90. Carol Jacoby 
    2 months ago
    $150
  91. Andrew and Jennifer Burkemper 
    2 months ago
    $500
  92. Taylor, Ramin, and Rumi Rezvani 
    2 months ago
    $250
  93. Anonymous 
    2 months ago
    $200
  94. Lynn Oveson 
    2 months ago
    $50
  95. Ashley Schneekloth 
    2 months ago
    $50
  96. Anonymous 
    2 months ago
    $30
  97. Yen-Cheng Liu 
    2 months ago
    $500
  98. Anonymous 
    2 months ago
    $40
  99. Peter Kirkpatrick 
    2 months ago
    $40
  100. Anonymous 
    2 months ago
    $100
  101. Alexis Goubran-Wang 
    2 months ago
    $100
  102. Diana Connaughton 
    2 months ago
    $100
  103. Tonya Cooper 
    2 months ago
    $30
  104. Marc Krull 
    2 months ago
    $250
  105. Brian Slechta 
    2 months ago
    $500
  106. Emily Fitzgerald 
    2 months ago
    $100
  107. Mr. and Mrs. AuYoung 
    2 months ago
    $100
  108. Richard Eacker 
    2 months ago
    $500
  109. Fannie OGorman 
    2 months ago
    $1,000
  110. Kate & Tyler DeWein 
    2 months ago
    $250
  111. Michael Mertes 
    2 months ago
    $100
  112. Anonymous 
    2 months ago
    $20
  113. Zachary DeCosta 
    2 months ago
    $100
  114. Melvin, Emily and Eliza Lathara 
    2 months ago
    $1,000
  115. Theodros Yigzaw 
    2 months ago
    $500
  116. Emily Boyd 
    2 months ago
    $100
  117. Craig Okada 
    2 months ago
    $1,000
  118. Anonymous 
    2 months ago
    $100
  119. Lynn/Jim Oveson/Pruitt 
    2 months ago
    $1,000
  120. John Mangones 
    2 months ago
    $500
  121. Caitlin White 
    2 months ago
    $250
  122. Alvin (and Helena) AuYoung 
    2 months ago
    $1,000
  123. KURTIS CHANG 
    2 months ago
    $1,000
  124. Ian Steiner 
    2 months ago
    $250
  125. Terry Steiner 
    2 months ago
    $50
  126. Cyrus, Anna & Raina Press 
    2 months ago
    $1,000
  127. Shubham Mukherjee 
    2 months ago
    $1,000
  128. Kathie Phan 
    2 months ago
    $100
  129. Raj Sengupta 
    2 months ago
    $1,000
  130. Anonymous 
    2 months ago
    $250
  131. Jimmie Ye 
    2 months ago
    $250
  132. Edward Liao 
    2 months ago
    $1,000
  133. Kendra O\'Brien 
    2 months ago
    $100
  134. Carrie Foote 
    2 months ago
    $250
  135. Chu Family 
    2 months ago
    $10,000
  136. JP & MD Paquette 
    2 months ago
    $300
  137. Martha Savage 
    2 months ago
    $500
  138. Kathleen Briones 
    2 months ago
    $100
  139. Sarah Pruitt 
    2 months ago
    $100
  140. Cecile Pitts 
    2 months ago
    $250
  141. Lynn/Jim Oveson/Pruitt 
    2 months ago
    $2,000
  142. Kelsey & Allen Chu 
    3 months ago
    $10,000

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