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 (133)

  1. Anita Vonhold 
    2 months ago
    50
  2. Angela Salerno 
    2 months ago
    250
  3. Bernice Crane 
    2 months ago
    50
  4. Marylou Shehan 
    2 months ago
    25
  5. Vito & Evelyn Manzoli 
    2 months ago
    25
  6. Pauline Iantoni 
    2 months ago
    25
  7. Judith Booth 
    2 months ago
    25
  8. Bernice Crane 
    2 months ago
    25
  9. Mary Jane Panullo 
    2 months ago
    25
  10. Bernice Crane 
    2 months ago
    25
  11. Alina Coleman 
    3 months ago
    100
  12. john Aversano 
    3 months ago
    75
  13. Micaela Darling 
    3 months ago
    50
  14. Patricia Garrison 
    3 months ago
    20
  15. Christine Salerno 
    3 months ago
    50
  16. Daniela Ricci 
    3 months ago
    100
  17. Ed Vitagliano 
    4 months ago
    100
  18. Santi Aversano 
    4 months ago
    50
  19. Bernice Crane 
    4 months ago
    25
  20. Daniel Johnston 
    4 months ago
    150
  21. Steve Wertheimer 
    4 months ago
    1,000
  22. JMCMRJ SORRELL FOUNDATION 
    5 months ago
    5,000
  23. LLR Inc. 
    5 months ago
    144.50
  24. Christine Salerno 
    5 months ago
    1,000
  25. Julia Rozo 
    5 months ago
    50
  26. Sylvia Lee 
    5 months ago
    100
  27. Joseph and Ainslie Vorel 
    5 months ago
    50
  28. Christine Salerno 
    5 months ago
    500
  29. Kerry Cassidy 
    5 months ago
    145
  30. MARY JANE SALERNO 
    5 months ago
    50
  31. Carl/Alina Salerno/Coleman 
    5 months ago
    25
  32. Ann Kelly 
    5 months ago
    50
  33. Angela Darling 
    5 months ago
    50
  34. Angela Jirau 
    5 months ago
    100
  35. Anthony Massucci 
    5 months ago
    200
  36. Maria Salerno 
    5 months ago
    100
  37. Lory Castro 
    5 months ago
    500
  38. Angie Massey 
    6 months ago
    100
  39. Kerry Cassidy 
    6 months ago
    200
  40. Alexander Moschina 
    6 months ago
    50
  41. Craig Benelli 
    6 months ago
    350
  42. Tiffany Westwater 
    6 months ago
    100
  43. Bonnie Nelson 
    6 months ago
    100
  44. Miriam Salerno 
    6 months ago
    100
  45. Pat Coleman 
    6 months ago
    100
  46. Jeannette Vaccaro 
    6 months ago
    50
  47. Elaine Williams 
    6 months ago
    100
  48. Jennifer Stott 
    6 months ago
    50
  49. Maureen Cassidy 
    6 months ago
    100
  50. Jennifer Schmalz 
    6 months ago
    10
  51. Claudia Carvajal 
    6 months ago
    100
  52. Claire Smith 
    6 months ago
    50
  53. Barbara O\'Mahoney 
    6 months ago
    50
  54. Carolyn Ryan 
    6 months ago
    50
  55. Petra Von Euw 
    6 months ago
    50
  56. Herman & Louis Salerno 
    6 months ago
    100
  57. Rowan and Jeannine Pragdat 
    6 months ago
    25
  58. Mary Dougherty  
    6 months ago
    40
  59. Sara Mooradian 
    6 months ago
    50
  60. Melissa Small 
    6 months ago
    50
  61. George Kuzma 
    6 months ago
    100
  62. Stefanie Chernyakov 
    6 months ago
    100
  63. Robin Jacobson 
    6 months ago
    200
  64. Megan Bliven 
    6 months ago
    50
  65. Renee LeMire 
    6 months ago
    30
  66. Kelli Cozza 
    6 months ago
    100
  67. Isabelle Howell 
    6 months ago
    100
  68. Kenneth Lohsen 
    6 months ago
    500
  69. Amanda Frey 
    6 months ago
    100
  70. Therese V Harris 
    6 months ago
    50
  71. Felicia Fera 
    6 months ago
    75
  72. Viraj Mehta 
    6 months ago
    100
  73. Kerrian Fournier 
    6 months ago
    25
  74. Peter Hopkins 
    6 months ago
    100
  75. Lisa Biller 
    6 months ago
    220
  76. Valerie Potter 
    6 months ago
    25
  77. Linda Tinelle 
    6 months ago
    25
  78. M&m Thürig 
    6 months ago
    100
  79. Nadia Sehnaoui Boulifa 
    6 months ago
    100
  80. Thomas Buckley 
    6 months ago
    30
  81. Bill Thomas 
    6 months ago
    100
  82. David Bernstein 
    6 months ago
    1,000
  83. Tim Hill 
    6 months ago
    100
  84. Paola H 
    6 months ago
    200
  85. ELIZABETH NGONZI 
    6 months ago
    100
  86. Stephen Dove 
    6 months ago
    100
  87. Leslie A Hess 
    6 months ago
    200
  88. Jessica Byrne 
    6 months ago
    20
  89. Julie Rinard 
    6 months ago
    50
  90. Chiemi Hayashi 
    6 months ago
    100
  91. Carl Schreck 
    6 months ago
    25
  92. Angela Butch 
    6 months ago
    50
  93. Yasmine Benjelloun 
    6 months ago
    25
  94. Cara Di Edwardo 
    6 months ago
    100
  95. Jodi Burchfield 
    6 months ago
    50
  96. Melanie Niklas 
    6 months ago
    10
  97. Jeanine Ryan 
    6 months ago
    25
  98. Atrina Brill 
    6 months ago
    20
  99. June Worms 
    6 months ago
    100
  100. Lauren Ross 
    6 months ago
    200
  101. Michael and Becky Davis 
    6 months ago
    100
  102. Rachael Tella 
    6 months ago
    100
  103. Amaya Chenu 
    6 months ago
    50
  104. Angela Salerno 
    6 months ago
    100
  105. Margaret Ferris 
    6 months ago
    10
  106. Richard Campbell 
    6 months ago
    100
  107. Laurie Muzzillo 
    6 months ago
    50
  108. Cristina Canas-Brown 
    6 months ago
    50
  109. Amanda Ely 
    6 months ago
    100
  110. Grace Mulhall 
    6 months ago
    25
  111. Carrie Edwards 
    6 months ago
    30
  112. Stephanie Benelli  
    6 months ago
    50
  113. Suzanne Fiore 
    6 months ago
    10
  114. Michelle OMahoney 
    6 months ago
    100
  115. Laurene Benelli 
    6 months ago
    100
  116. Sofia Fletcher 
    6 months ago
    25
  117. Gregory Bernarda 
    6 months ago
    100
  118. Jill Freeman 
    6 months ago
    50
  119. Carmen Platt 
    6 months ago
    50
  120. Bernice Crane 
    6 months ago
    50
  121. Joanna Gordon 
    6 months ago
    50
  122. Anuradha Gurung 
    6 months ago
    100
  123. David Salerno 
    6 months ago
    50
  124. Delphine Voillemot Tranié 
    6 months ago
    100
  125. Jesse Fahnestock 
    6 months ago
    100
  126. SAMAN AHSAN 
    6 months ago
    100
  127. Alejandra Real Mnedez 
    6 months ago
    100
  128. Maria J Vorel 
    6 months ago
    100
  129. Tanya Primiani 
    6 months ago
    100
  130. Kostka Genia 
    6 months ago
    100
  131. beverly salerno  
    6 months ago
    100
  132. Beth Johnson 
    6 months ago
    100
  133. Abra Frankel 
    6 months ago
    50

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

Please upgrade today!