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 (77)

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

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