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 (167)

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

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