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 (70)

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

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