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 (264)

  1. John Mahoney FB Fundraiser 
    3 months ago
    $930
  2. beverly salerno 
    5 months ago
    $100
  3. Daniel Johnston 
    6 months ago
    $500
  4. Delphine Voillemot 
    8 months ago
    $100
  5. David Bernstein 
    8 months ago
    $858
  6. Anonymous 
    8 months ago
    $500
  7. Ruth Katz 
    8 months ago
    $100
  8. Jennifer Stott 
    8 months ago
    $100
  9. Alejandra Blickensdorfer  
    8 months ago
    $60
  10. Stacy Salerno 
    8 months ago
    $20
  11. Laurene Benelli 
    8 months ago
    $100
  12. Angela Jirau 
    8 months ago
    $50
  13. Sarah Tyack 
    8 months ago
    $50
  14. Bernice Vitagliano 
    8 months ago
    $50
  15. Rhonda Huff 
    8 months ago
    $100
  16. Saman Ahsan 
    8 months ago
    $100
  17. Beverly Salerno  
    8 months ago
    $100
  18. Zara Jeffery 
    8 months ago
    $30
  19. Michael Shanahan 
    9 months ago
    $50
  20. Ainslie Vorel 
    9 months ago
    $25
  21. Beverly Salerno 
    9 months ago
    $50
  22. Suzanne Fiore 
    9 months ago
    $10
  23. Tanya Primiani 
    9 months ago
    $50
  24. Marsh & McLennan Dollars for Doers 
    9 months ago
    $500
  25. Andrew Wolff 
    10 months ago
    $500
  26. Noah Aberlin 
    10 months ago
    $500
  27. Carl & Laura Salerno 
    10 months ago
    $30
  28. Google  
    11 months ago
    $3,000
  29. Alan Levine 
    11 months ago
    $200
  30. Stephen Dove 
    1 year ago
    $2,000
  31. Christine Salerno 
    1 year ago
    $1,550
  32. John O'Mahoney 
    1 year ago
    $820
  33. Leslie A Hess 
    1 year ago
    $300
  34. Felicia Fera  
    1 year ago
    $50
  35. Saman Ahsan 
    1 year ago
    $100
  36. Alejandra Blickensdorfer  
    1 year ago
    $50
  37. Google Inc. Matching Gifts 
    1 year ago
    $1,000
  38. Constance Rubino 
    1 year ago
    $50
  39. Maria Salerno 
    1 year ago
    $50
  40. Angela Jirau 
    1 year ago
    $85
  41. Angela's Birthday Facebook donations 
    1 year ago
    $2,450
  42. Nicholas Scalisi 
    2 years ago
    $100
  43. Constance Rubino 
    2 years ago
    $50
  44. Laura & Carl Salerno 
    2 years ago
    $50
  45. Iris B 
    2 years ago
    $25
  46. Gavin Pratt 
    2 years ago
    $50
  47. Nayibis Plasencia 
    2 years ago
    $10
  48. Alexander Moschina 
    2 years ago
    $20
  49. Angela Darling 
    2 years ago
    $50
  50. David Bernstein 
    2 years ago
    $100
  51. Keri Birmingham 
    2 years ago
    $20
  52. Annike Timmermans 
    2 years ago
    $100
  53.  
    2 years ago
    $1,500
  54. Anthony Massucci 
    2 years ago
    $300
  55. Marlene Waxman 
    2 years ago
    $100
  56. Lucia Kossarova 
    2 years ago
    $100
  57. Jessica Benardello 
    2 years ago
    $100
  58. Julie Owen 
    2 years ago
    $50
  59. Anuradha Gurung  
    2 years ago
    $50
  60. Nola Bunny 
    2 years ago
    $15
  61. Jasmine Farahan 
    2 years ago
    $250
  62. Erin Kinsella 
    2 years ago
    $25
  63. Zara Jeffery 
    2 years ago
    $20
  64. Jeremy Brandt-Vorel 
    2 years ago
    $25
  65. Angela Jirau 
    2 years ago
    $40
  66. Beth Bernstein 
    2 years ago
    $50
  67. Louis Salerno 
    2 years ago
    $50
  68. Elaine Williams 
    2 years ago
    $100
  69. Angela Salerno 
    2 years ago
    $50
  70. Stefanie Nelson 
    2 years ago
    $100
  71. Ashley Harrison 
    2 years ago
    $25
  72. Cristina Canas 
    2 years ago
    $100
  73. Anonymous 
    2 years ago
    $100
  74. Saman Ahsan 
    2 years ago
    $100
  75. Genia Kostka 
    2 years ago
    $100
  76. Beverly Salerno  
    2 years ago
    $50
  77. KC Dickerson 
    2 years ago
    $100
  78. Gareth Owens 
    2 years ago
    $100
  79. Jill Freeman 
    2 years ago
    $100
  80. David Salerno 
    2 years ago
    $50
  81. William Lee Howell 
    2 years ago
    $500
  82. Theodore Murphy  
    2 years ago
    $100
  83. Miriam Salerno 
    2 years ago
    $100
  84. Ed & Bernice Vitagliano 
    2 years ago
    $100
  85. Jeannine Pragdat 
    2 years ago
    $25
  86. Beth Ann Ingrassia 
    2 years ago
    $50
  87. Doreen McCollum 
    2 years ago
    $50
  88. Doreen McCollum 
    2 years ago
    $100
  89. Maria Cassisi 
    2 years ago
    $100
  90. Maria Cassisi 
    2 years ago
    $100
  91. MARY JANE SALERNO 
    2 years ago
    $25
  92. June Worms 
    2 years ago
    $100
  93. Kerry von Bismarck  
    2 years ago
    $50
  94. Jesse Fahnestock 
    2 years ago
    $50
  95. Ania Janczak 
    2 years ago
    $100
  96. Elizabeth Johnson 
    2 years ago
    $100
  97. Tiffany West 
    2 years ago
    $100
  98. JoAnn Abraham 
    2 years ago
    $50
  99. Joanna Gordon 
    2 years ago
    $50
  100. Isabelle Howell 
    2 years ago
    $100
  101. alejandra real mendez 
    2 years ago
    $50
  102. Anonymous 
    2 years ago
    $25
  103. Charles Bauer 
    2 years ago
    $100
  104. Laurene Benelli 
    2 years ago
    $100
  105. Beverly Salerno 
    2 years ago
    $25
  106. Ann Kelly 
    2 years ago
    $100
  107. Lauren Ross 
    2 years ago
    $100
  108. Jen Albanese 
    2 years ago
    $250
  109. Rose Schmidt 
    2 years ago
    $25
  110. David Bernstein 
    2 years ago
    $250
  111. Lisa & Andrew Wolff 
    2 years ago
    $500
  112. Dollars for Doers  
    2 years ago
    $500
  113. Patricia Gatto Puglia 
    2 years ago
    $75
  114. Virginia Norris 
    2 years ago
    $50
  115. Anonymous 
    2 years ago
    $200
  116. Stefanie Nelson 
    2 years ago
    $100
  117. Erin Kinsella 
    2 years ago
    $25
  118. Beth Bernstein 
    2 years ago
    $100
  119. Loree lash 
    2 years ago
    $100
  120. Leslie A Hess 
    2 years ago
    $500
  121. Cynthia Gutierrez  
    2 years ago
    $100
  122. Micaela Darling 
    2 years ago
    $100
  123. Angela Darling 
    2 years ago
    $50
  124. Karen Harwell 
    2 years ago
    $50
  125. Brianna Garvey 
    2 years ago
    $20
  126. Nayibis Plasencia 
    2 years ago
    $50
  127. SAMAN AHSAN 
    2 years ago
    $100
  128. Angela Jirau 
    2 years ago
    $50
  129. Alan Levine 
    2 years ago
    $200
  130. Alan Levine 
    2 years ago
    $200
  131. Anonymous 
    2 years ago
    $25
  132. Anita Vonhold 
    2 years ago
    $50
  133. Angela Salerno 
    2 years ago
    $250
  134. Bernice Crane 
    2 years ago
    $50
  135. Marylou Shehan 
    2 years ago
    $25
  136. Vito & Evelyn Manzoli 
    2 years ago
    $25
  137. Pauline Iantoni 
    2 years ago
    $25
  138. Judith Booth 
    2 years ago
    $25
  139. Bernice Crane 
    2 years ago
    $25
  140. Mary Jane Panullo 
    2 years ago
    $25
  141. Bernice Crane 
    2 years ago
    $25
  142. Alina Coleman 
    2 years ago
    $100
  143. john Aversano 
    2 years ago
    $75
  144. Micaela Darling 
    2 years ago
    $50
  145. Patricia Garrison 
    2 years ago
    $20
  146. Christine Salerno 
    2 years ago
    $50
  147. Daniela Ricci 
    2 years ago
    $100
  148. Ed Vitagliano 
    3 years ago
    $100
  149. Santi Aversano 
    3 years ago
    $50
  150. Bernice Crane 
    3 years ago
    $25
  151. Daniel Johnston 
    3 years ago
    $150
  152. Steve Wertheimer 
    3 years ago
    $1,000
  153. JMCMRJ SORRELL FOUNDATION 
    3 years ago
    $5,000
  154. LLR Inc. 
    3 years ago
    $144.50
  155. Christine Salerno 
    3 years ago
    $1,000
  156. Julia Rozo 
    3 years ago
    $50
  157. Sylvia Lee 
    3 years ago
    $100
  158. Joseph and Ainslie Vorel 
    3 years ago
    $50
  159. Christine Salerno 
    3 years ago
    $500
  160. Kerry Cassidy 
    3 years ago
    $145
  161. MARY JANE SALERNO 
    3 years ago
    $50
  162. Carl/Alina Salerno/Coleman 
    3 years ago
    $25
  163. Ann Kelly 
    3 years ago
    $50
  164. Angela Darling 
    3 years ago
    $50
  165. Angela Jirau 
    3 years ago
    $100
  166. Anthony Massucci 
    3 years ago
    $200
  167. Maria Salerno 
    3 years ago
    $100
  168. Lory Castro 
    3 years ago
    $500
  169. Angie Massey 
    3 years ago
    $100
  170. Kerry Cassidy 
    3 years ago
    $200
  171. Alexander Moschina 
    3 years ago
    $50
  172. Craig Benelli 
    3 years ago
    $350
  173. Tiffany Westwater 
    3 years ago
    $100
  174. Bonnie Nelson 
    3 years ago
    $100
  175. Miriam Salerno 
    3 years ago
    $100
  176. Pat Coleman 
    3 years ago
    $100
  177. Jeannette Vaccaro 
    3 years ago
    $50
  178. Elaine Williams 
    3 years ago
    $100
  179. Jennifer Stott 
    3 years ago
    $50
  180. Maureen Cassidy 
    3 years ago
    $100
  181. Jennifer Schmalz 
    3 years ago
    $10
  182. Claudia Carvajal 
    3 years ago
    $100
  183. Claire Smith 
    3 years ago
    $50
  184. Barbara O\'Mahoney 
    3 years ago
    $50
  185. Carolyn Ryan 
    3 years ago
    $50
  186. Petra Von Euw 
    3 years ago
    $50
  187. Herman & Louis Salerno 
    3 years ago
    $100
  188. Rowan and Jeannine Pragdat 
    3 years ago
    $25
  189. Mary Dougherty  
    3 years ago
    $40
  190. Sara Mooradian 
    3 years ago
    $50
  191. Melissa Small 
    3 years ago
    $50
  192. George Kuzma 
    3 years ago
    $100
  193. Stefanie Chernyakov 
    3 years ago
    $100
  194. Robin Jacobson 
    3 years ago
    $200
  195. Megan Bliven 
    3 years ago
    $50
  196. Renee LeMire 
    3 years ago
    $30
  197. Kelli Cozza 
    3 years ago
    $100
  198. Isabelle Howell 
    3 years ago
    $100
  199. Kenneth Lohsen 
    3 years ago
    $500
  200. Amanda Frey 
    3 years ago
    $100
  201. Therese V Harris 
    3 years ago
    $50
  202. Felicia Fera 
    3 years ago
    $75
  203. Viraj Mehta 
    3 years ago
    $100
  204. Kerrian Fournier 
    3 years ago
    $25
  205. Peter Hopkins 
    3 years ago
    $100
  206. Lisa Biller 
    3 years ago
    $220
  207. Valerie Potter 
    3 years ago
    $25
  208. Linda Tinelle 
    3 years ago
    $25
  209. M&m Thürig 
    3 years ago
    $100
  210. Nadia Sehnaoui Boulifa 
    3 years ago
    $100
  211. Thomas Buckley 
    3 years ago
    $30
  212. Bill Thomas 
    3 years ago
    $100
  213. David Bernstein 
    3 years ago
    $1,000
  214. Tim Hill 
    3 years ago
    $100
  215. Paola H 
    3 years ago
    $200
  216. ELIZABETH NGONZI 
    3 years ago
    $100
  217. Stephen Dove 
    3 years ago
    $100
  218. Leslie A Hess 
    3 years ago
    $200
  219. Jessica Byrne 
    3 years ago
    $20
  220. Julie Rinard 
    3 years ago
    $50
  221. Chiemi Hayashi 
    3 years ago
    $100
  222. Carl Schreck 
    3 years ago
    $25
  223. Angela Butch 
    3 years ago
    $50
  224. Yasmine Benjelloun 
    3 years ago
    $25
  225. Cara Di Edwardo 
    3 years ago
    $100
  226. Jodi Burchfield 
    3 years ago
    $50
  227. Melanie Niklas 
    3 years ago
    $10
  228. Jeanine Ryan 
    3 years ago
    $25
  229. Atrina Brill 
    3 years ago
    $20
  230. June Worms 
    3 years ago
    $100
  231. Lauren Ross 
    3 years ago
    $200
  232. Michael and Becky Davis 
    3 years ago
    $100
  233. Rachael Tella 
    3 years ago
    $100
  234. Amaya Chenu 
    3 years ago
    $50
  235. Angela Salerno 
    3 years ago
    $100
  236. Margaret Ferris 
    3 years ago
    $10
  237. Richard Campbell 
    3 years ago
    $100
  238. Laurie Muzzillo 
    3 years ago
    $50
  239. Cristina Canas-Brown 
    3 years ago
    $50
  240. Amanda Ely 
    3 years ago
    $100
  241. Grace Mulhall 
    3 years ago
    $25
  242. Carrie Edwards 
    3 years ago
    $30
  243. Stephanie Benelli  
    3 years ago
    $50
  244. Suzanne Fiore 
    3 years ago
    $10
  245. Michelle OMahoney 
    3 years ago
    $100
  246. Laurene Benelli 
    3 years ago
    $100
  247. Sofia Fletcher 
    3 years ago
    $25
  248. Gregory Bernarda 
    3 years ago
    $100
  249. Jill Freeman 
    3 years ago
    $50
  250. Carmen Platt 
    3 years ago
    $50
  251. Bernice Crane 
    3 years ago
    $50
  252. Joanna Gordon 
    3 years ago
    $50
  253. Anuradha Gurung 
    3 years ago
    $100
  254. David Salerno 
    3 years ago
    $50
  255. Delphine Voillemot Tranié 
    3 years ago
    $100
  256. Jesse Fahnestock 
    3 years ago
    $100
  257. SAMAN AHSAN 
    3 years ago
    $100
  258. Alejandra Real Mnedez 
    3 years ago
    $100
  259. Maria J Vorel 
    3 years ago
    $100
  260. Tanya Primiani 
    3 years ago
    $100
  261. Kostka Genia 
    3 years ago
    $100
  262. beverly salerno  
    3 years ago
    $100
  263. Beth Johnson 
    3 years ago
    $100
  264. Abra Frankel 
    3 years ago
    $50

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

Please upgrade today!