Kelly O'Donahoe's running 22.4 MILES #untilshecan for RETT #gp22 Princess Lily Bug - Disney's Princess Fairy Tale Challege

 

Tim and I  are running the Disney Princess Glass Slipper Challenge (because Lily can't walk/run and Lily is also non verbal) with Team Girl Power for the 3rd year for Lily who has Rett Syndrome. We are actually running and raising funds for the entire Rett community. 

We had the honor of meeting Lily and her wonderful family (who flew in from Portland Oregon) for the first time 2016, then Momma Lisa ran with us in the 2017 10K.

We met several other families during the weekend whose precious daughters have also been diagnosed with Rett, to say the least it was overwhelming to Tim & I knowing there is a possible cure out there for this disease and we want to help any way we can.

Please take the time to read the quick facts and scroll through the photo's of Lily and her family. We just NEED to raise awareness/funding for research. Please help us get to where we need to be. Race Dates: 2/22-25, 2018 - Disney Princess Glass Slipper Challenge Quick

Facts: Debilitating neurological (movement) disorder that predominantly affects females. Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein. The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands. Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.as prevalent as Cystic Fibrosis, ALS and Huntington’s. Another little girl is born with Rett Syndrome every 90 minutes. Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

 

https://www.facebook.com/magnoliashope/videos/989274061201149/

$2,066.50

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My Supporters

  • Michelle Grady Run like the wind! February 2018 $25.00
  • Kassie Ortiz For Lily! February 2018 $25.00
  • RoofSmith of Tampa Bay, Inc. Good luck with your event!!!! July 2017 $250.00
  • Anonymous June 2017 $500.00
  • Bright Future Electric LLC Thank you for all you do Kelly! June 2017 $250.00
  • One Way Wall Systems May 2017 $1,000.00
  • Anonymous June 2017 $500.00
  • RoofSmith of Tampa Bay, Inc. Good luck with your event!!!! July 2017 $250.00
  • Bright Future Electric LLC Thank you for all you do Kelly! June 2017 $250.00
  • Michelle Grady Run like the wind! February 2018 $25.00

My Teammates