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

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