Boston Marathon for Adam 2019

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Dear family and friends,

The last two years in a row I’ve been fortunate to compete in the Boston Marathon. I am happy to say that I also qualified for this year's race, something I feel very excited about! I am once again racing in honor of my son Adam and his condition Mecp2 Duplication Syndrome.

This is a rare genetic disorder which has prevented Adam from being able to speak, to run, and to play with other children. Adam further suffers from seizures, low tone and has a higher risk of infections. Many children with this condition don't make it to adulthood. Adam’s cognition is intact and essentially he is trapped within his own body. Imagine all of your parental fears manifested in a single diagnosis.

However, there is hope!

The lab of Dr. Huda Zoghbi at the Baylor College of Medicine announced in November 2015 that the syndrome has proven to be reversible. The pathway to treatment has been shown, but will come at high cost. With adequate funding, Adam could be cured within a matter of a few years, and for a parent this would be the greatest gift of all.

Please consider supporting me and in turn give Adam the chance at a real future and life.

Thank you for your love and support.

Sincerely,

Elin

What is MECP2 Duplication Syndrome?

Unlike Rett Syndrome, which is caused by mutations or deletions in the MECP2 gene, the symptoms that arise from the duplication syndrome are caused, as the name suggests, by having an area of the X chromosome (Xq28), which includes the MECP2 gene, erroneously duplicated. The section duplicated may vary from individual to individual and may also contribute to the severity of the disease.
The syndrome has been diagnosed mostly in boys. The majority inherits the duplication from their mothers who are typically asymptomatic due to favorable X chromosome inactivation (the moms have inactivated the X chromosome that harbors the duplication). Carrier mothers have a 50% chance of passing on the duplication to their children, meaning MECP2 Duplication Syndrome may be quite prevalent.

Learn more about MECP2 Duplication here.

What is the MECP2 Duplication Syndrome Fund at RSRT?

In an effort to immediately leverage RSRT's deep knowledge base and well established global scientific networks the MECP2 Duplication Syndrome Fund at RSRT was created in late 2010. The Fund puts the intellectual and scientific resources of RSRT immediately to work for the MECP2 Duplication/Triplication Syndrome community.
The Fund exclusively supports projects devoted to the study and means of treatment of MECP2 Duplication Syndrome. 100% of every dollar contributed is invested in research - not a single penny goes to overhead.
In 2012, a parent-driven effort was established to raise funds for the initial reversal experiments conducted at the Baylor College of Medicine. Families pledged to raise $401 to cover the cost of the experiments. The initiative was a success, and the 401 Project was born. All funds raised through the 401 Project initiative are directly deposited into the MECP2 Duplication Syndrome Fund at RSRT.

Learn more about RSRT here.

Supporters (132)

  1. kirsten lovett 
    2 months ago
    $100
  2.  
    3 months ago
    $20
  3. Susan Bond 
    3 months ago
    $50
  4. Michael Miller 
    3 months ago
    $275
  5. Heather LaRosa 
    3 months ago
    $50
  6. J Richard Conrad 
    3 months ago
    $50
  7. Christine DiGiammarino 
    3 months ago
    $25
  8. Maria Johansson 
    3 months ago
    $40
  9. Barbara Klanderman 
    3 months ago
    $100
  10. Paul Geffken 
    3 months ago
    $50
  11. Elin Wallerstein  
    3 months ago
    $50
  12. Jaine Phillips 
    3 months ago
    $50
  13. Belinda Sapienza 
    3 months ago
    $25
  14. Amy Austin 
    3 months ago
    $20
  15. Nicole Allen 
    3 months ago
    $50
  16. Christine Duffy 
    3 months ago
    $25
  17. Elizabeth von der Heydt 
    3 months ago
    $300
  18. Sue Parke 
    3 months ago
    $20
  19. Marilyn Licciardello 
    3 months ago
    $50
  20. Karen Purtschert 
    3 months ago
    $25
  21. Sue Dibble 
    3 months ago
    $50
  22. Sarah Creutz 
    3 months ago
    $50
  23. Kaitlin Sorensen 
    3 months ago
    $25
  24. Irina Penttinen-Klein 
    3 months ago
    $300
  25. Rose Sullivan 
    3 months ago
    $25
  26. Alexis Latsey 
    3 months ago
    $15
  27. Liz Oneil 
    3 months ago
    $10
  28. Jennifer Colson 
    3 months ago
    $20
  29. Hayley O’Sullivan 
    3 months ago
    $50
  30. Aimee Phleger 
    3 months ago
    $50
  31. Marianne Racioppi 
    3 months ago
    $50
  32. Carl Ahlund 
    3 months ago
    $370
  33. Matthew Davey 
    3 months ago
    $370
  34. Kim Briggs 
    3 months ago
    $50
  35. Dahlia Khankan 
    3 months ago
    $25
  36. Kerin McLoughlin 
    3 months ago
    $100
  37. Deanna Pomfret 
    3 months ago
    $200
  38. Christeen Murray 
    3 months ago
    $50
  39. Julee Gibson 
    3 months ago
    $50
  40. BethAnne Magnuson 
    3 months ago
    $25
  41. Jay Schaefer  
    3 months ago
    $25
  42.  
    3 months ago
    $50
  43. Natalie Howard 
    3 months ago
    $50
  44. Stephanie Owen 
    3 months ago
    $50
  45. Sheryl Rudis 
    3 months ago
    $25
  46. Peter Waterman 
    3 months ago
    $25
  47. Glen Hartford 
    3 months ago
    $75
  48. Rhonda Boudreau 
    3 months ago
    $20
  49. Debra Daley 
    3 months ago
    $50
  50. Tara Anne St.Hilaire 
    3 months ago
    $50
  51. Anonymous 
    3 months ago
    $75
  52. Ray and Rita Kraemer 
    3 months ago
    $100
  53. Mary Dyan 
    3 months ago
    $20
  54. Regina Kean 
    3 months ago
    $10
  55. Christina Lilliehook 
    3 months ago
    $25
  56. Julie Ambrose 
    3 months ago
    $45
  57. Marcia Anderson 
    4 months ago
    $1,000
  58. Marcia Anderson 
    4 months ago
    $1
  59. Rusty Bilodeau 
    4 months ago
    $100
  60. Ana and Jaime FloresQuero 
    4 months ago
    $50
  61. Karin Buffett 
    4 months ago
    $20
  62. Analog Devices 
    4 months ago
    $50
  63. Helena Blomqvist 
    4 months ago
    $100
  64. Frida Frank 
    4 months ago
    $30
  65. Elizabeth Murphy 
    4 months ago
    $50
  66. CHRISTOPHER HAYES 
    4 months ago
    $100
  67. Karin Sodervall 
    4 months ago
    $50
  68. Ingrid Geygan 
    4 months ago
    $50
  69. Tim Guthrie 
    4 months ago
    $150
  70. Deborah Smith 
    4 months ago
    $40
  71. Jenn Ezell 
    4 months ago
    $50
  72. Shannon Clough 
    4 months ago
    $20
  73. Darrin Johnson 
    4 months ago
    $50
  74. Lisa Plume 
    4 months ago
    $100
  75. Nick Savarese 
    4 months ago
    $25
  76. Ulrika Gerth 
    4 months ago
    $20
  77. Henrik Strandberg 
    4 months ago
    $200
  78. Kristina Brassel 
    4 months ago
    $25
  79. Anonymous 
    4 months ago
    $10
  80. Karen Robinson  
    4 months ago
    $50
  81. Eva and Tomas Frank 
    4 months ago
    $200
  82. Hanna Frank 
    4 months ago
    $25
  83. Eileen Sheets 
    4 months ago
    $100
  84. Megan Last 
    4 months ago
    $100
  85. Donald Guthrie 
    4 months ago
    $50
  86. Anna Simon 
    4 months ago
    $150
  87. Mindy Meyer 
    4 months ago
    $20
  88. John Lilly 
    4 months ago
    $50
  89. Nadine Johnson 
    4 months ago
    $50
  90. Zandra Faulkner 
    5 months ago
    $100
  91. Amy Pekock 
    5 months ago
    $50
  92. Charlotte Cantone 
    5 months ago
    $50
  93. Kenneth Levine 
    5 months ago
    $100
  94. Elisa Goldberg 
    5 months ago
    $25
  95. Bill Gardner 
    5 months ago
    $50
  96. Kim and Kristin Angelo 
    5 months ago
    $25
  97. Marie Sjodin  
    5 months ago
    $25
  98. GUSTAVO J CASTRO 
    5 months ago
    $50
  99. Olga Lee 
    5 months ago
    $50
  100. Susie Kraemer 
    5 months ago
    $500
  101. Susan Harding 
    5 months ago
    $200
  102. Barry Cullen 
    5 months ago
    $100
  103. Carrie Leary 
    5 months ago
    $50
  104. Ruth Marrion 
    5 months ago
    $500
  105. Pete Paquette 
    5 months ago
    $100
  106. Melanie MacLean 
    5 months ago
    $100
  107. Caryl Haley 
    5 months ago
    $100
  108. Frida Backe 
    5 months ago
    $100
  109. Huda Zoghbi 
    5 months ago
    $500
  110. Kelly Gilbert 
    5 months ago
    $50
  111. Charlotte Lenfest 
    5 months ago
    $50
  112. Cheryl Bruk 
    5 months ago
    $50
  113. Genevieve Rajewski 
    5 months ago
    $30
  114. Dan & Michele Bertrand 
    5 months ago
    $25
  115. Shannon Donahue 
    5 months ago
    $20
  116. Leonardo Covarrubias 
    5 months ago
    $100
  117. COLLEEN HARRINGTON 
    5 months ago
    $100
  118. Heather Belson 
    5 months ago
    $26.20
  119. Josefin Berg 
    5 months ago
    $100
  120. Melanie Pappas 
    5 months ago
    $25
  121. Maria Ruedlinger Walker 
    6 months ago
    $25
  122. Linda Wells 
    6 months ago
    $100
  123. Janice Parsons 
    6 months ago
    $100
  124. Denise Francese 
    6 months ago
    $25
  125. Linda Jelson 
    6 months ago
    $30
  126. Anonymous 
    6 months ago
    $50
  127. Leslie Kehoe 
    6 months ago
    $50
  128. Jennifer Hawkes  
    6 months ago
    $50
  129. Elise Carbonell  
    6 months ago
    $50
  130. Randy Heins 
    6 months ago
    $100
  131. Pam Fallon 
    6 months ago
    $50
  132. Marcia Anderson 
    5 months ago
    $1,000

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