A Cure for Lily

  • Description
  • FAQ
  • Comments
  • Supporters

In January 2014, shortly before she turned three, our daughter Lily was diagnosed with Rett Syndrome. This is a disorder that happens spontaneously, randomly, and to people on all walks of life.

Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities.

We believe that a cure is possible in her lifetime. But not without the support of people like you. You can save her and thousands of other little girls around the world. Your donation will help fund essential research of effective treatments and to find a cure for Rett.

Please. Join this fight.


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 (223)

  1. Nicholas Scalisi 
    6 days ago
    $100
  2. Constance Rubino 
    6 days ago
    $50
  3. Laura & Carl Salerno 
    6 days ago
    $50
  4. Iris B 
    1 week ago
    $25
  5. Gavin Pratt 
    2 weeks ago
    $50
  6. Nayibis Plasencia 
    2 months ago
    $10
  7. Alexander Moschina 
    2 months ago
    $20
  8. Angela Darling 
    2 months ago
    $50
  9. David Bernstein 
    2 months ago
    $100
  10. Keri Birmingham 
    2 months ago
    $20
  11. Annike Timmermans 
    2 months ago
    $100
  12.  
    2 months ago
    $1,500
  13. Anthony Massucci 
    2 months ago
    $300
  14. Marlene Waxman 
    2 months ago
    $100
  15. Lucia Kossarova 
    2 months ago
    $100
  16. Jessica Benardello 
    2 months ago
    $100
  17. Julie Owen 
    2 months ago
    $50
  18. Anuradha Gurung  
    2 months ago
    $50
  19. Nola Bunny 
    2 months ago
    $15
  20. Jasmine Farahan 
    2 months ago
    $250
  21. Erin Kinsella 
    2 months ago
    $25
  22. Zara Jeffery 
    2 months ago
    $20
  23. Jeremy Brandt-Vorel 
    2 months ago
    $25
  24. Angela Jirau 
    2 months ago
    $40
  25. Beth Bernstein 
    2 months ago
    $50
  26. Louis Salerno 
    2 months ago
    $50
  27. Elaine Williams 
    2 months ago
    $100
  28. Angela Salerno 
    2 months ago
    $50
  29. Stefanie Nelson 
    2 months ago
    $100
  30. Ashley Harrison 
    2 months ago
    $25
  31. Cristina Canas 
    2 months ago
    $100
  32. Anonymous 
    2 months ago
    $100
  33. Saman Ahsan 
    3 months ago
    $100
  34. Genia Kostka 
    3 months ago
    $100
  35. Beverly Salerno  
    3 months ago
    $50
  36. KC Dickerson 
    3 months ago
    $100
  37. Gareth Owens 
    3 months ago
    $100
  38. Jill Freeman 
    3 months ago
    $100
  39. David Salerno 
    3 months ago
    $50
  40. William Lee Howell 
    3 months ago
    $500
  41. Theodore Murphy  
    3 months ago
    $100
  42. Miriam Salerno 
    3 months ago
    $100
  43. Ed & Bernice Vitagliano 
    3 months ago
    $100
  44. Jeannine Pragdat 
    3 months ago
    $25
  45. Beth Ann Ingrassia 
    3 months ago
    $50
  46. Doreen McCollum 
    2 months ago
    $50
  47. Doreen McCollum 
    3 months ago
    $100
  48. Maria Cassisi 
    3 months ago
    $100
  49. Maria Cassisi 
    3 months ago
    $100
  50. MARY JANE SALERNO 
    3 months ago
    $25
  51. June Worms 
    3 months ago
    $100
  52. Kerry von Bismarck  
    3 months ago
    $50
  53. Jesse Fahnestock 
    3 months ago
    $50
  54. Ania Janczak 
    3 months ago
    $100
  55. Elizabeth Johnson 
    3 months ago
    $100
  56. Tiffany West 
    3 months ago
    $100
  57. JoAnn Abraham 
    3 months ago
    $50
  58. Joanna Gordon 
    3 months ago
    $50
  59. Isabelle Howell 
    3 months ago
    $100
  60. alejandra real mendez 
    3 months ago
    $50
  61. Anonymous 
    3 months ago
    $25
  62. Charles Bauer 
    3 months ago
    $100
  63. Laurene Benelli 
    3 months ago
    $100
  64. Beverly Salerno 
    3 months ago
    $25
  65. Ann Kelly 
    3 months ago
    $100
  66. Lauren Ross 
    3 months ago
    $100
  67. Jen Albanese 
    3 months ago
    $250
  68. Rose Schmidt 
    3 months ago
    $25
  69. David Bernstein 
    4 months ago
    $250
  70. Lisa & Andrew Wolff 
    4 months ago
    $500
  71. Dollars for Doers  
    4 months ago
    $500
  72. Patricia Gatto Puglia 
    4 months ago
    $75
  73. Virginia Norris 
    5 months ago
    $50
  74. Anonymous 
    5 months ago
    $200
  75. Stefanie Nelson 
    5 months ago
    $100
  76. Erin Kinsella 
    5 months ago
    $25
  77. Beth Bernstein 
    5 months ago
    $100
  78. Loree lash 
    5 months ago
    $100
  79. Leslie A Hess 
    5 months ago
    $500
  80. Cynthia Gutierrez  
    5 months ago
    $100
  81. Micaela Darling 
    5 months ago
    $100
  82. Angela Darling 
    5 months ago
    $50
  83. Karen Harwell 
    6 months ago
    $50
  84. Brianna Garvey 
    6 months ago
    $20
  85. Nayibis Plasencia 
    7 months ago
    $50
  86. SAMAN AHSAN 
    7 months ago
    $100
  87. Angela Jirau 
    7 months ago
    $50
  88. Alan Levine 
    7 months ago
    $200
  89. Alan Levine 
    7 months ago
    $200
  90. Anonymous 
    9 months ago
    $25
  91. Anita Vonhold 
    11 months ago
    $50
  92. Angela Salerno 
    11 months ago
    $250
  93. Bernice Crane 
    11 months ago
    $50
  94. Marylou Shehan 
    11 months ago
    $25
  95. Vito & Evelyn Manzoli 
    11 months ago
    $25
  96. Pauline Iantoni 
    11 months ago
    $25
  97. Judith Booth 
    11 months ago
    $25
  98. Bernice Crane 
    11 months ago
    $25
  99. Mary Jane Panullo 
    11 months ago
    $25
  100. Bernice Crane 
    11 months ago
    $25
  101. Alina Coleman 
    11 months ago
    $100
  102. john Aversano 
    11 months ago
    $75
  103. Micaela Darling 
    12 months ago
    $50
  104. Patricia Garrison 
    12 months ago
    $20
  105. Christine Salerno 
    12 months ago
    $50
  106. Daniela Ricci 
    12 months ago
    $100
  107. Ed Vitagliano 
    1 year ago
    $100
  108. Santi Aversano 
    1 year ago
    $50
  109. Bernice Crane 
    1 year ago
    $25
  110. Daniel Johnston 
    1 year ago
    $150
  111. Steve Wertheimer 
    1 year ago
    $1,000
  112. JMCMRJ SORRELL FOUNDATION 
    1 year ago
    $5,000
  113. LLR Inc. 
    1 year ago
    $144.50
  114. Christine Salerno 
    1 year ago
    $1,000
  115. Julia Rozo 
    1 year ago
    $50
  116. Sylvia Lee 
    1 year ago
    $100
  117. Joseph and Ainslie Vorel 
    1 year ago
    $50
  118. Christine Salerno 
    1 year ago
    $500
  119. Kerry Cassidy 
    1 year ago
    $145
  120. MARY JANE SALERNO 
    1 year ago
    $50
  121. Carl/Alina Salerno/Coleman 
    1 year ago
    $25
  122. Ann Kelly 
    1 year ago
    $50
  123. Angela Darling 
    1 year ago
    $50
  124. Angela Jirau 
    1 year ago
    $100
  125. Anthony Massucci 
    1 year ago
    $200
  126. Maria Salerno 
    1 year ago
    $100
  127. Lory Castro 
    1 year ago
    $500
  128. Angie Massey 
    1 year ago
    $100
  129. Kerry Cassidy 
    1 year ago
    $200
  130. Alexander Moschina 
    1 year ago
    $50
  131. Craig Benelli 
    1 year ago
    $350
  132. Tiffany Westwater 
    1 year ago
    $100
  133. Bonnie Nelson 
    1 year ago
    $100
  134. Miriam Salerno 
    1 year ago
    $100
  135. Pat Coleman 
    1 year ago
    $100
  136. Jeannette Vaccaro 
    1 year ago
    $50
  137. Elaine Williams 
    1 year ago
    $100
  138. Jennifer Stott 
    1 year ago
    $50
  139. Maureen Cassidy 
    1 year ago
    $100
  140. Jennifer Schmalz 
    1 year ago
    $10
  141. Claudia Carvajal 
    1 year ago
    $100
  142. Claire Smith 
    1 year ago
    $50
  143. Barbara O\'Mahoney 
    1 year ago
    $50
  144. Carolyn Ryan 
    1 year ago
    $50
  145. Petra Von Euw 
    1 year ago
    $50
  146. Herman & Louis Salerno 
    1 year ago
    $100
  147. Rowan and Jeannine Pragdat 
    1 year ago
    $25
  148. Mary Dougherty  
    1 year ago
    $40
  149. Sara Mooradian 
    1 year ago
    $50
  150. Melissa Small 
    1 year ago
    $50
  151. George Kuzma 
    1 year ago
    $100
  152. Stefanie Chernyakov 
    1 year ago
    $100
  153. Robin Jacobson 
    1 year ago
    $200
  154. Megan Bliven 
    1 year ago
    $50
  155. Renee LeMire 
    1 year ago
    $30
  156. Kelli Cozza 
    1 year ago
    $100
  157. Isabelle Howell 
    1 year ago
    $100
  158. Kenneth Lohsen 
    1 year ago
    $500
  159. Amanda Frey 
    1 year ago
    $100
  160. Therese V Harris 
    1 year ago
    $50
  161. Felicia Fera 
    1 year ago
    $75
  162. Viraj Mehta 
    1 year ago
    $100
  163. Kerrian Fournier 
    1 year ago
    $25
  164. Peter Hopkins 
    1 year ago
    $100
  165. Lisa Biller 
    1 year ago
    $220
  166. Valerie Potter 
    1 year ago
    $25
  167. Linda Tinelle 
    1 year ago
    $25
  168. M&m Thürig 
    1 year ago
    $100
  169. Nadia Sehnaoui Boulifa 
    1 year ago
    $100
  170. Thomas Buckley 
    1 year ago
    $30
  171. Bill Thomas 
    1 year ago
    $100
  172. David Bernstein 
    1 year ago
    $1,000
  173. Tim Hill 
    1 year ago
    $100
  174. Paola H 
    1 year ago
    $200
  175. ELIZABETH NGONZI 
    1 year ago
    $100
  176. Stephen Dove 
    1 year ago
    $100
  177. Leslie A Hess 
    1 year ago
    $200
  178. Jessica Byrne 
    1 year ago
    $20
  179. Julie Rinard 
    1 year ago
    $50
  180. Chiemi Hayashi 
    1 year ago
    $100
  181. Carl Schreck 
    1 year ago
    $25
  182. Angela Butch 
    1 year ago
    $50
  183. Yasmine Benjelloun 
    1 year ago
    $25
  184. Cara Di Edwardo 
    1 year ago
    $100
  185. Jodi Burchfield 
    1 year ago
    $50
  186. Melanie Niklas 
    1 year ago
    $10
  187. Jeanine Ryan 
    1 year ago
    $25
  188. Atrina Brill 
    1 year ago
    $20
  189. June Worms 
    1 year ago
    $100
  190. Lauren Ross 
    1 year ago
    $200
  191. Michael and Becky Davis 
    1 year ago
    $100
  192. Rachael Tella 
    1 year ago
    $100
  193. Amaya Chenu 
    1 year ago
    $50
  194. Angela Salerno 
    1 year ago
    $100
  195. Margaret Ferris 
    1 year ago
    $10
  196. Richard Campbell 
    1 year ago
    $100
  197. Laurie Muzzillo 
    1 year ago
    $50
  198. Cristina Canas-Brown 
    1 year ago
    $50
  199. Amanda Ely 
    1 year ago
    $100
  200. Grace Mulhall 
    1 year ago
    $25
  201. Carrie Edwards 
    1 year ago
    $30
  202. Stephanie Benelli  
    1 year ago
    $50
  203. Suzanne Fiore 
    1 year ago
    $10
  204. Michelle OMahoney 
    1 year ago
    $100
  205. Laurene Benelli 
    1 year ago
    $100
  206. Sofia Fletcher 
    1 year ago
    $25
  207. Gregory Bernarda 
    1 year ago
    $100
  208. Jill Freeman 
    1 year ago
    $50
  209. Carmen Platt 
    1 year ago
    $50
  210. Bernice Crane 
    1 year ago
    $50
  211. Joanna Gordon 
    1 year ago
    $50
  212. Anuradha Gurung 
    1 year ago
    $100
  213. David Salerno 
    1 year ago
    $50
  214. Delphine Voillemot Tranié 
    1 year ago
    $100
  215. Jesse Fahnestock 
    1 year ago
    $100
  216. SAMAN AHSAN 
    1 year ago
    $100
  217. Alejandra Real Mnedez 
    1 year ago
    $100
  218. Maria J Vorel 
    1 year ago
    $100
  219. Tanya Primiani 
    1 year ago
    $100
  220. Kostka Genia 
    1 year ago
    $100
  221. beverly salerno  
    1 year ago
    $100
  222. Beth Johnson 
    1 year ago
    $100
  223. Abra Frankel 
    1 year ago
    $50

This is a unique website which will require a more modern browser to work!

Please upgrade today!