Bears Run for Connor Mansalis

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On November 18 an Executive MBA team is running the Berkeley Half Marathon to raise funds for a very important cause that directly affects the son of one of their classmates. For last year’s half marathon we’re proud and grateful to say we raised almost $10,000. We hope to beat that this year! Here is more about that cause from Kate Mansalis:

Connor Mansalis was born Sept 3, 2012 and was diagnosed with MECP2 Duplication Syndrome shortly after, when a respiratory arrest and feeding issues landed him in the neonatal intensive care unit at Children’s Hospital of Oakland. We had no idea what this diagnosis meant, and neither did the team of doctors who was caring for Connor. Through extensive internet searching, we came across the Rett Syndrome Research Trust (RSRT) and the 401 project. A non-profit made up of families of children with this diagnosis, the 401 project has raised over $1.2 million and is the largest single source of research funding for MECP2 Duplication. The progress that has been achieved so far has inspired us to join the fight in raising awareness and much needed funds for the very promising cures that are closer than ever. Please join us in supporting this work and donate in honor of Connor, who struggles every day against the hardships of the REVERSIBLE syndrome! Click here for more information.


Thank you!


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 (71)

  1. Manoj & Divya Thomas 
    2 months ago
    $100
  2. Michael Gittin 
    8 months ago
    $100
  3. Vlasia Pechlivanoglou 
    8 months ago
    $200
  4. Saileel Vijaykar 
    9 months ago
    $50
  5. Vlasia Pechlivanoglou 
    10 months ago
    $250
  6. Anonymous 
    11 months ago
    $20
  7. eric dedeke 
    1 year ago
    $500
  8. Amelia Brinker  
    1 year ago
    $30
  9. Gary Mullaney 
    1 year ago
    $50
  10. Ronald Sasaki 
    1 year ago
    $260
  11. Susan, Mehmet, Ingrid, Mark 
    1 year ago
    $350
  12. Saileel Vijaykar 
    1 year ago
    $50
  13. Brian Wilkins 
    1 year ago
    $100
  14. Juliet Gardner 
    1 year ago
    $40
  15. Jeanne Ormsby 
    1 year ago
    $36
  16. Beth Leven 
    1 year ago
    $50
  17. Amy Davis 
    1 year ago
    $100
  18. Jessica LaBounty 
    1 year ago
    $100
  19. Sarah Brinker 
    1 year ago
    $50
  20. Gabriel Briscoe 
    1 year ago
    $100
  21. Ryan Evans 
    1 year ago
    $100
  22. Ryan Evans 
    1 year ago
    $100
  23. Beth Pollak 
    1 year ago
    $36
  24. Trevor Buehl 
    1 year ago
    $100
  25. Jonathan Wong 
    1 year ago
    $50
  26. Adam & Dorothee Howes 
    1 year ago
    $100
  27. Anonymous 
    1 year ago
    $25
  28. Ann and Brinker 
    1 year ago
    $100
  29. Ellie Wigodsky 
    1 year ago
    $25
  30. Zoe Hyatt 
    1 year ago
    $50
  31. Jean Brinker 
    1 year ago
    $50
  32. Kyle and Melissa Kutsche  
    1 year ago
    $100
  33. Karin Johnson 
    1 year ago
    $150
  34. Jim & Sus Griffin 
    1 year ago
    $50
  35. David Polzin 
    1 year ago
    $50
  36. Patricia Baerwald 
    1 year ago
    $1,000
  37. Jim Griffin 
    1 year ago
    $250
  38. Anonymous 
    1 year ago
    $100
  39. Kevin Nguyen 
    1 year ago
    $100
  40. Anonymous 
    1 year ago
    $200
  41. Kas Farsad 
    1 year ago
    $200
  42. Anonymous 
    1 year ago
    $100
  43. Julia Hantman 
    1 year ago
    $290
  44. Neil Shah 
    1 year ago
    $25
  45. Laura Teclemariam 
    1 year ago
    $100
  46. Varun Bedi 
    1 year ago
    $350
  47. Anonymous 
    1 year ago
    $100
  48. Anonymous 
    1 year ago
    $50
  49. Naren Ramani 
    1 year ago
    $25
  50. Mohit Marwaha 
    1 year ago
    $250
  51. Lauren Burke 
    1 year ago
    $50
  52. sahar kleinman 
    1 year ago
    $100
  53. Maura ONeill 
    1 year ago
    $100
  54. Anonymous 
    1 year ago
    $100
  55. Wendi Chiong 
    1 year ago
    $20
  56. Neal Johnson 
    1 year ago
    $100
  57. Marcus Krauss 
    1 year ago
    $200
  58. Audrey Ng 
    1 year ago
    $100
  59. Mlika Katherine 
    1 year ago
    $100
  60. Jessica Truitt 
    1 year ago
    $30
  61. Saira George 
    1 year ago
    $100
  62. Lauren Pearcy 
    1 year ago
    $10
  63. Anonymous 
    1 year ago
    $50
  64. Anonymous 
    1 year ago
    $50
  65. Manoj Thomas 
    1 year ago
    $1,000
  66. Raymond Daly 
    1 year ago
    $15
  67. Ricardo Cornejo 
    1 year ago
    $500
  68. Kim Olson 
    1 year ago
    $100
  69. Martha scurr 
    1 year ago
    $10
  70. Camille Wall 
    1 year ago
    $25
  71. Gary Mullaney 
    1 year ago
    $50

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