Running to Reverse Rett

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October 28th. On this date in 2003 I received the news that my dad had passed away from what we would come to find out was a pulmonary embolism. He was in great health, retired, and regularly riding his bicycle. It was a shock to my entire family and anyone who knew him. On this date exactly 10 years later, in 2013, my good friends Kristen and Shawn Connor finally received the answer to their questions about their daughter Brynn. Why was she delayed in both speech and physical skills? Why was she regressing? Brynn was diagnosed with Rett Syndrome.

Kristen once said to me, when we talked about the coincidence, that maybe my dad was Brynn's angel. I've come to believe that there are no coincidences so I think that Kristen must be right. So on October 23rd of this year, the day after what would have been my dad's 70th birthday, I am going to run the Atlantic City Marathon. Atlantic City is where I grew up, and where both my dad and I were living at the time of his death. He and I used to run the boardwalk in the mornings together and my love of running comes from him. I am excited to honor him by using this race as a chance to raise funds for the Rett Syndrome Research Trust and to help Reverse Rett for Brynn and so many girls like her!



What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.


Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.


Supporters (42)

  1. Kristin Macone 
    1 year ago
    $50
  2. James Ricciotti 
    1 year ago
    $100
  3. A.M. Fitness 
    1 year ago
    $50
  4. Regina Perkinson 
    1 year ago
    $100
  5. Heather Dombrovskiy 
    1 year ago
    $25
  6. Carrie Banks 
    1 year ago
    $20
  7. Caitlin Fernandez 
    1 year ago
    $10
  8. Stephanie Bernheisel 
    1 year ago
    $10
  9. Shawna Mease 
    1 year ago
    $75
  10. Michelle Scott 
    1 year ago
    $50
  11. Laura McMullin 
    1 year ago
    $25
  12. Bridget Chila 
    1 year ago
    $50
  13. Anthony Schramm 
    1 year ago
    $50
  14. Anthony Schramm 
    1 year ago
    $50
  15. Sheila Flanagan 
    1 year ago
    $50
  16. Teresa Burnette 
    1 year ago
    $25
  17. Sonia Filoon 
    1 year ago
    $100
  18. Mary Hulme 
    1 year ago
    $100
  19. Betty Campbell 
    1 year ago
    $100
  20. acac Fitness & Wellness Midlothian  
    1 year ago
    $50
  21. Allison Brown 
    1 year ago
    $50
  22. Kathleen Conlogue 
    1 year ago
    $25
  23. Ashley McTaggart 
    1 year ago
    $30
  24. Patricia Wilkin 
    1 year ago
    $100
  25. Elizabeth Keys 
    1 year ago
    $50
  26. Susan Ruane 
    1 year ago
    $50
  27. Angie pollard 
    1 year ago
    $25
  28. Maureen Aucoin 
    1 year ago
    $50
  29. Melissa Miller 
    1 year ago
    $50
  30.  
    1 year ago
    $25
  31. Arianne Kline  
    1 year ago
    $50
  32. Denise McTaggart 
    1 year ago
    $100
  33. Melanie Ruffino 
    1 year ago
    $50
  34. Robin Casper 
    1 year ago
    $100
  35. Mary Sharpe 
    1 year ago
    $10
  36. Jennifer Rosefsky 
    1 year ago
    $150
  37. Mary jo Jarema 
    1 year ago
    $25
  38. Katie Carosello 
    1 year ago
    $25
  39. Christine Lowman 
    1 year ago
    $25
  40. Lexie Burgess 
    1 year ago
    $10
  41. Jessica Hughes 
    1 year ago
    $50
  42. Mary-Katherine Fleming 
    1 year ago
    $25

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