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 (72)

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

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