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 5th 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. Lisa will be runnng again with us 2019 for her 2nd 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: 2/22-24, 2019 - Disney Princess Fairy Tale Challenge!
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.
Please help me support Girl Power 2 Cure in their efforts to raise funds for research for Rett Syndrome.
Rett Syndrome is a debilitating neurological disorder that predominantly affects females but can affect boys. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.
Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands, and depend on their families for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.
Despite their physical disabilities, girls and boys with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to their recovery.
Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.
Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top-notch institutions are delving into Rett Syndrome.
Not only will their work help thousands of children and adults worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer’s and many other disorders.
In essence, our kids may hold the key to a cure for millions of people suffering from dozens of disabilities.