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 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 (172)

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

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