Bears Run for Connor Mansalis

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On November 19 a team from the Executive MBA class of 2018 is running the Berkeley Half Marathon to raise funds for a very important cause that directly affects the son of one of their classmates. 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 
    4 months ago
    $100
  2. Vlasia Pechlivanoglou 
    4 months ago
    $200
  3. Saileel Vijaykar 
    5 months ago
    $50
  4. Vlasia Pechlivanoglou 
    5 months ago
    $250
  5. Anonymous 
    7 months ago
    $20
  6. eric dedeke 
    9 months ago
    $500
  7. Amelia Brinker  
    9 months ago
    $30
  8. Gary Mullaney 
    9 months ago
    $50
  9. Ronald Sasaki 
    9 months ago
    $260
  10. Susan, Mehmet, Ingrid, Mark 
    9 months ago
    $350
  11. Saileel Vijaykar 
    9 months ago
    $50
  12. Brian Wilkins 
    9 months ago
    $100
  13. Juliet Gardner 
    9 months ago
    $40
  14. Jeanne Ormsby 
    9 months ago
    $36
  15. Beth Leven 
    9 months ago
    $50
  16. Amy Davis 
    9 months ago
    $100
  17. Jessica LaBounty 
    9 months ago
    $100
  18. Sarah Brinker 
    9 months ago
    $50
  19. Gabriel Briscoe 
    9 months ago
    $100
  20. Ryan Evans 
    9 months ago
    $100
  21. Ryan Evans 
    9 months ago
    $100
  22. Beth Pollak 
    9 months ago
    $36
  23. Trevor Buehl 
    9 months ago
    $100
  24. Jonathan Wong 
    9 months ago
    $50
  25. Adam & Dorothee Howes 
    9 months ago
    $100
  26. Anonymous 
    9 months ago
    $25
  27. Ann and Brinker 
    9 months ago
    $100
  28. Ellie Wigodsky 
    9 months ago
    $25
  29. Zoe Hyatt 
    9 months ago
    $50
  30. Jean Brinker 
    9 months ago
    $50
  31. Kyle and Melissa Kutsche  
    9 months ago
    $100
  32. Karin Johnson 
    9 months ago
    $150
  33. Jim & Sus Griffin 
    9 months ago
    $50
  34. David Polzin 
    9 months ago
    $50
  35. Patricia Baerwald 
    9 months ago
    $1,000
  36. Jim Griffin 
    9 months ago
    $250
  37. Anonymous 
    10 months ago
    $100
  38. Kevin Nguyen 
    10 months ago
    $100
  39. Anonymous 
    10 months ago
    $200
  40. Kas Farsad 
    10 months ago
    $200
  41. Anonymous 
    10 months ago
    $100
  42. Julia Hantman 
    10 months ago
    $290
  43. Neil Shah 
    10 months ago
    $25
  44. Laura Teclemariam 
    10 months ago
    $100
  45. Varun Bedi 
    10 months ago
    $350
  46. Anonymous 
    10 months ago
    $100
  47. Anonymous 
    10 months ago
    $50
  48. Naren Ramani 
    10 months ago
    $25
  49. Mohit Marwaha 
    10 months ago
    $250
  50. Lauren Burke 
    10 months ago
    $50
  51. sahar kleinman 
    10 months ago
    $100
  52. Maura ONeill 
    10 months ago
    $100
  53. Anonymous 
    10 months ago
    $100
  54. Wendi Chiong 
    10 months ago
    $20
  55. Neal Johnson 
    10 months ago
    $100
  56. Marcus Krauss 
    10 months ago
    $200
  57. Audrey Ng 
    10 months ago
    $100
  58. Mlika Katherine 
    10 months ago
    $100
  59. Jessica Truitt 
    10 months ago
    $30
  60. Saira George 
    10 months ago
    $100
  61. Lauren Pearcy 
    10 months ago
    $10
  62. Anonymous 
    10 months ago
    $50
  63. Anonymous 
    10 months ago
    $50
  64. Manoj Thomas 
    10 months ago
    $1,000
  65. Raymond Daly 
    10 months ago
    $15
  66. Ricardo Cornejo 
    10 months ago
    $500
  67. Kim Olson 
    10 months ago
    $100
  68. Martha scurr 
    11 months ago
    $10
  69. Camille Wall 
    11 months ago
    $25
  70. Gary Mullaney 
    11 months ago
    $50

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