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 (78)

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

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