Lorenzo’s Run for Research

  • Description
  • FAQ
  • Comments
  • Supporters

Lorenzo and his dad, Alessandro, will run the Munich half marathon on October 8, 2017 to raise funding for research for MECP2 Duplication Syndrome. Lorenzo will “coach” his dad while being pushed in his running stroller. The training for this race is well under way and no small feat as our growing boy weighs 24 kg or 53 lbs!

Please help support our father-son running duo by pledging donations. 100% of every donation goes to research. It is a very important time for the MECP2 Duplication families, as Dr. Huda Zoghbi of Baylor University in Houston, Texas has found a cure to reverse the disease and now all that is keeping our boy from a healthier life is funding to support clinical trials which will help children all over the world.

Lorenzo and children like him have a chance at a better life with this research. Imagine for a moment what you would do if you had the opportunity to save your child’s life. We are humbly asking our loved ones for help in attaining this for him. Lorenzo has had challenges and overcome many obstacles in his 8 years, and in January 2017 he was diagnosed with epilepsy, one of many symptoms of MECP2 Duplication. The seizures are not easily controlled with medicine. MECP2 Duplication Syndrome threatens to take away his ability to walk, eat, play and thrive. Please help us help our child. Please read about MECP2 Duplication Syndrome research at www.401project.com.

Lorenzo and his dad are working hard for this race. Please show your support by donating any amount or choosing one of the giving levels to become one of Lorenzo’s Running Team!

Thanks for your support,

Suzi, Alex, Sofia and Lorenzo


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.
The 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 (131)

  1. Elizabeth Sanzone 
    2 weeks ago
    $50
  2. Alessandro Presicce 
    3 months ago
    $25
  3. Cristina Cobarzan 
    3 months ago
    $50
  4. Alison Fottrell 
    4 months ago
    $25
  5. Catherine Pugsley 
    4 months ago
    $50
  6. Bridget Kelly 
    4 months ago
    $50
  7. Alessandro & Suzi Centrone 
    4 months ago
    $1,101
  8. Sarah Stratman 
    4 months ago
    $50
  9. Michele Williams 
    4 months ago
    $1,000
  10. Blancan-Callen Stephanie 
    4 months ago
    $250
  11. Christian Neubauer 
    4 months ago
    $50
  12. Jimena De Muro 
    5 months ago
    $50
  13. Anonymous 
    5 months ago
    $50
  14. Andrew Bennett 
    5 months ago
    $10
  15. Anonymous 
    5 months ago
    $10
  16. Antonio Caballero 
    5 months ago
    $10
  17. Alban Moriniere 
    5 months ago
    $50
  18. Fabian Mottl 
    5 months ago
    $50
  19. Dimitri Christopher 
    5 months ago
    $100
  20. Bunco Group Munich  
    5 months ago
    $114
  21. Thomas International Italia SRL Unipersonale 
    5 months ago
    $500
  22. Rachel Cole 
    5 months ago
    $50
  23. Sarah Twining 
    5 months ago
    $100
  24. Allison Windon 
    5 months ago
    $50
  25. Brian and Lauren Carlin 
    5 months ago
    $250
  26. Nicole Viggiano 
    5 months ago
    $75
  27. Timothy Thomas 
    5 months ago
    $100
  28. Siobhan Pedersen 
    5 months ago
    $50
  29. Therese Howley 
    5 months ago
    $100
  30. Becky Vanderholm 
    5 months ago
    $50
  31. roberto grossi 
    5 months ago
    $50
  32. Gene and Erika Seran 
    5 months ago
    $500
  33. Anonymous 
    5 months ago
    $250
  34. Susan Johannes 
    5 months ago
    $250
  35. Casey Smith 
    5 months ago
    $50
  36. Jeremy Reiff 
    5 months ago
    $25
  37. Giuseppe Gualtieri 
    5 months ago
    $50
  38. Julie Ausland 
    5 months ago
    $100
  39. Fabio Cesaretti 
    5 months ago
    $50
  40. Pete Anderson 
    5 months ago
    $50
  41. Jennifer McKinney 
    5 months ago
    $100
  42. Meela Geus 
    5 months ago
    $100
  43. Allyson Rhatigan 
    5 months ago
    $50
  44. Anonymous 
    5 months ago
    $50
  45. Amanda Emery 
    5 months ago
    $50
  46. Maria Balestriero 
    5 months ago
    $100
  47. Karey Skiermont 
    5 months ago
    $50
  48. John & Michelle Woods 
    5 months ago
    $250
  49. Veronica Coduri 
    5 months ago
    $250
  50. Melissa DelRosso 
    5 months ago
    $100
  51. DANIELA PALADINI 
    5 months ago
    $100
  52. Ryan Hermsen 
    5 months ago
    $100
  53. Rachele Monfredi  
    5 months ago
    $100
  54. Sara Drumheller 
    5 months ago
    $20
  55. Lynn Martyn 
    5 months ago
    $25
  56. Martina Lucenti 
    5 months ago
    $100
  57. Laura Giorgi 
    5 months ago
    $50
  58. Jill Gettman 
    5 months ago
    $100
  59. Rafaella Chuahy 
    5 months ago
    $50
  60. Annie Bruns 
    5 months ago
    $50
  61. Angela Ullman 
    5 months ago
    $50
  62. Amy Rossitto  
    5 months ago
    $50
  63. Shalyss Lottermoser 
    5 months ago
    $50
  64. Nikki Maroni 
    5 months ago
    $25
  65. Francesca De Maria 
    6 months ago
    $100
  66. Jenn Cumberland 
    6 months ago
    $25
  67. Brittany Hardin  
    6 months ago
    $50
  68. Doris Petersen 
    6 months ago
    $50
  69. Karla Zeitz 
    6 months ago
    $50
  70. Anonymous 
    6 months ago
    $100
  71. Pierluigi Zaccaria 
    6 months ago
    $100
  72. Emily Ceccanti 
    6 months ago
    $100
  73. Giuseppe Cotugno 
    6 months ago
    $100
  74. Stephanie Bumgarner 
    6 months ago
    $50
  75. Jennifer Medinger 
    6 months ago
    $50
  76. gian luca ricciardi 
    6 months ago
    $25
  77. LUIGI VALLESE 
    6 months ago
    $50
  78. Sarah Vossoughi 
    6 months ago
    $100
  79. Teri Kearney 
    6 months ago
    $25
  80. Mary Yount 
    6 months ago
    $50
  81. Tracey Kaster 
    6 months ago
    $100
  82. Germano Buttazzo 
    6 months ago
    $500
  83. Anonymous 
    6 months ago
    $25
  84. IL PRISMA MILANO SPA IL PRISMA MILANO SPA 
    6 months ago
    $6,000
  85. Anonymous 
    6 months ago
    $10
  86. Lori Greene 
    6 months ago
    $50
  87. Mari-Carmen Laubenthal  
    6 months ago
    $50
  88. riccardo caserini 
    6 months ago
    $50
  89. Anonymous 
    6 months ago
    $10
  90. Anonymous 
    6 months ago
    $25
  91. Lara Costantini 
    6 months ago
    $50
  92. Francesco Costanzo 
    6 months ago
    $10
  93. viviana lapertosa 
    6 months ago
    $50
  94. GIULIA CUFFARO 
    6 months ago
    $50
  95. Connie Bateson 
    6 months ago
    $100
  96. Allison Balus 
    6 months ago
    $250
  97. Nicole Grant 
    6 months ago
    $20
  98. Wendy Gibson 
    6 months ago
    $100
  99. Suzi Hoeft 
    6 months ago
    $50
  100. Jeanne Hoopes 
    6 months ago
    $25
  101. Katie Davis 
    6 months ago
    $25
  102. Alessandro Faggiano 
    6 months ago
    $50
  103. Roberta Centrone 
    6 months ago
    $100
  104. Francesco De Santis 
    6 months ago
    $50
  105. Corrado Centrone 
    6 months ago
    $100
  106. Roberto Carolina Federico Fabio 
    6 months ago
    $100
  107. Sandra O\'Sullivan 
    6 months ago
    $100
  108. Eliana Di Caro 
    6 months ago
    $100
  109. Andrea Giordano 
    6 months ago
    $10
  110. Eline Tick 
    6 months ago
    $25
  111. Charissa & Greg Brinkman 
    6 months ago
    $50
  112. Paola Rotondo 
    6 months ago
    $50
  113. Pamela Paola Petrachi 
    6 months ago
    $100
  114. reginella castelli 
    6 months ago
    $50
  115. Andrea Foli 
    6 months ago
    $50
  116. Emily Brown 
    6 months ago
    $100
  117. Gabriel Jenison  
    6 months ago
    $50
  118. Kelly Henderson 
    6 months ago
    $100
  119. Deniz Botkin 
    6 months ago
    $250
  120. Edo e Carlo Rezzonico 
    6 months ago
    $100
  121. Susan Conroy 
    6 months ago
    $250
  122. Guido and Anna Rezzonico 
    6 months ago
    $100
  123. Kelly Meek 
    6 months ago
    $100
  124. Cassandra Moore 
    6 months ago
    $100
  125. Victoria Ryan 
    6 months ago
    $100
  126. Page Powers 
    6 months ago
    $200
  127. Marlene Braun 
    6 months ago
    $100
  128. Carol Rowe 
    6 months ago
    $200
  129. Kara Wright 
    6 months ago
    $25
  130. Robin Seran 
    6 months ago
    $100
  131. Sofia Centrone 
    6 months ago
    $50

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

Please upgrade today!