A Cure for Madeline

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Since receiving Madeline's diagnosis of Rett Syndrome in June 2017 we have learned so much about our daughter and her unique needs and abilities. Our journey has brought us closer to our family, our friends, and our colleagues. Additionally, it has connected us to an extremely passionate and dedicated community of caregivers, therapists, teachers, medical professionals, and researchers.

Madeline has a strong desire to interact with the world around her, and she has a genuine interest in establishing communication.  However, one of the most tragic aspects of this neurological condition is the apraxia. Apraxia is the inability to carry out cognitive intent.  Madeline intends to move a particular way, but the neurological signal doesn't reliably get to the right muscles to move them consistently.  Madeline knows what she wants to say, but she is unable to say it, gesture it, sign it, point to it, wave, or pull you in the direction of what she wants or needs.  We have a little girl who is literally trapped inside her own body patiently waiting to be set free.

When you meet Madeline, she may not look you in the eye immediately, but if you speak in a soft and gentle and manner, without putting any demands on her-she typically warms right up and shows you her heart-melting smile. Once you have established trust with her, you will have her attention and her affection.

Madeline enjoys listening to Disney music, watching Frozen, Moana, and SING!  She also loves the feel of sand in her hands, swinging, being read to, eating chicken at any hour of the day, playing in water, going for stroller rides, working hard with her teachers and therapists, and having dance parties with her siblings Emily & Jack.

Until a cure is found, our family will continue to raise awareness and critical funds for RSRT.  An average of ninety-six percent of every dollar donated to RSRT goes directly to their brilliant research program.

A heartfelt thank you goes out to everyone in our network who has either shared our link and/or donated to RSRT.  We thank you from the bottom of our hearts.

With love, hope, and many thanks,

Nick, Melissa, Emily, Madeline, & Jack Marino

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 (79)

  1. Paula Marino 
    6 months ago
    $50
  2. Francis & Kathleen Ryan 
    11 months ago
    $25
  3. Kathleen & Francis Ryan 
    12 months ago
    $100
  4. Tanya Scott 
    1 year ago
    $50
  5. Katherine Mcgraw  
    1 year ago
    $250
  6. Alison Burnside 
    1 year ago
    $100
  7. Deb Rutkowski 
    1 year ago
    $50
  8. Anonymous 
    1 year ago
    $50
  9. Kathleen and Francis Ryan 
    2 years ago
    $50
  10. Paula Fusco-Ragaini 
    2 years ago
    $20
  11. Myrle Richter 
    2 years ago
    $75
  12. Rita Richter-Lundquist 
    2 years ago
    $25
  13. Angela Barnett 
    2 years ago
    $20
  14. Nicole Condon 
    2 years ago
    $500
  15. Regeneron Matching Gifts 
    2 years ago
    $100
  16. Megan Redmond 
    2 years ago
    $50
  17. Rita Lundquist 
    2 years ago
    $50
  18. Kimberly O\'Connor 
    2 years ago
    $50
  19. Maribeth Wallace 
    2 years ago
    $100
  20. Anne Schwenzfeier 
    2 years ago
    $50
  21. Dorothy Usas 
    2 years ago
    $50
  22. Cori Rowe-Delehanty 
    2 years ago
    $100
  23. Taryn Morrissey 
    2 years ago
    $50
  24. Loretta Grimm  
    2 years ago
    $50
  25. Scott Campbell 
    2 years ago
    $100
  26. Kristen Watrous 
    2 years ago
    $40
  27. Jaclyn Chorwat 
    2 years ago
    $50
  28. Amy Kaplan 
    2 years ago
    $50
  29. Rick and Patricia Pierotti 
    2 years ago
    $100
  30. Deborah DelTorto 
    2 years ago
    $100
  31. Lisa McGork 
    2 years ago
    $50
  32. Kurt Richter 
    2 years ago
    $100
  33. Kelly Marino 
    2 years ago
    $300
  34. Abigail Neumann 
    2 years ago
    $100
  35. JENNIFER OCONNOR 
    2 years ago
    $50
  36. Earl Beck 
    2 years ago
    $1,000
  37. Peter Fusco 
    2 years ago
    $50
  38. Sandra Campbell 
    2 years ago
    $25
  39. Gina Loe 
    2 years ago
    $100
  40. Catherine Marschilok 
    2 years ago
    $100
  41. Charles Redd 
    2 years ago
    $100
  42. Katie McLean 
    2 years ago
    $50
  43. Stephanie & Gary Weinlein 
    2 years ago
    $100
  44. Marylyn Flanders 
    2 years ago
    $40
  45. Angela Barnett 
    2 years ago
    $500
  46. michael gregg 
    2 years ago
    $50
  47. Meaghan Chmura 
    2 years ago
    $250
  48. Ellen Gordon 
    2 years ago
    $50
  49. Amee Layne 
    2 years ago
    $100
  50. Karen Reichl 
    2 years ago
    $50
  51. Margaret OConnor 
    2 years ago
    $50
  52. Camille and Al Amodeo 
    2 years ago
    $100
  53. Robin Askins 
    2 years ago
    $50
  54. Jackie Michalski (Davey) 
    2 years ago
    $50
  55. Sarah Husted 
    2 years ago
    $50
  56. Karen Flanagan 
    2 years ago
    $100
  57. Joe Davey 
    2 years ago
    $100
  58. Robin Davey 
    2 years ago
    $100
  59. Lisa Hersh 
    2 years ago
    $100
  60. Paula Marino 
    2 years ago
    $100
  61. Kathy Cynamon 
    2 years ago
    $25
  62. Cindy Crowe 
    2 years ago
    $50
  63. Aly Laven Finkelstein 
    2 years ago
    $100
  64. Kelly Cynamon 
    2 years ago
    $25
  65. Michelle Foster 
    2 years ago
    $50
  66. Anonymous 
    2 years ago
    $10
  67. Maria Gallego 
    2 years ago
    $100
  68. Amy Sullivan 
    2 years ago
    $50
  69. Dan LaMar 
    2 years ago
    $100
  70. MEGHAN DADAMO 
    2 years ago
    $100
  71. Anonymous 
    2 years ago
    $20
  72. Ruth Morrow 
    2 years ago
    $50
  73. Leah Behe 
    2 years ago
    $50
  74. Brady Hannon 
    2 years ago
    $1,000
  75. Jerel Lane 
    2 years ago
    $25
  76. Pete James 
    2 years ago
    $100
  77. Peter Gannon 
    2 years ago
    $250
  78. Dominick Purnomo 
    2 years ago
    $250
  79. Myrle Richter 
    2 years ago
    $50

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