Running For Rett Syndrome

My personal fundraising page for GP2C's annual Disney Princess Half Marathon Weekend!

Why Do I Run?

I’m a PA, Navy wife, Disney lover, and mom of 3 (9 & 5yo daughters and 7yo son). I work as a
clinical education manager for a medical technology company dedicated to preparing patients with mobility issues for freedom using innovative technology. But my day to day role is mom and Rett Syndrome advocate. This is my running story: 

I took up running during a time when there were a lot of unknowns with our youngest daughter Charlie. She began her life like any normal child, however she beagn missing milestones at 6 months of age. On September 13, 2018 at 21 months of age we finally had it. The diagnosis that changed our life. Charlie had been diagnosed with Rett Syndrome.

Rett Syndrome is a neuromuscular disorder that affects every part of the body. It is very rare;
only 1 in 20,000 are diagnosed. It affects mainly girls, but boys can have it too. It is a
genetic mutation that causes loss of one’s ability to walk, talk, and use their hands. Symptoms
include breath holding, teeth grinding, hand wringing, seizures, constipation, heart problems,
and lung problems.

Back then, I took up running for my mental health. Now I use it as a platform to educate and advocate. I have run Disney’s Princess Half Marathon every year since her diagnosis with GP2C to raise money for a cure. 

A little about Rett Syndrome:

Rett Syndrome is a debilitating neurological disorder that predominantly affects females (but can also affect boys). Rett Syndrome is the leading genetic cause of severe neurological impairment in girls and is characterized by a single gene mutation that leads to underproduction of an important brain protein known as MECP2.

Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Most lose their ability to speak, walk or use their hands, and depend on their families for every part of their day. Complications also include seizures, scoliosis, and the potential for sudden death.

Despite their physical disabilities, girls and boys with Rett Syndrome function at a similar cognitive level to their peers. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to a cure and their recovery. 

Today, there is no cure. But Rett Syndrome is potentially CURABLE! Mouse and primate experimental treatments have proven that once MECP2 protein levels are restored to normal levels, symptoms subside.

My Supporters

  • Bethany Harrington October 2022 $25.00
  • Leighona Powell October 2022
  • Kevin Theodore October 2022 $50.00
  • Allyson Bull October 2022 $25.00
  • Pam Hendershot October 2022 $25.00
  • Heather Decot See you Saturday Jenn!! Charlie Strong!! September 2022 $100.00
  • Julie Patterson Love Charlie! Let's find a cure!!! September 2022 $100.00
  • Ellie West September 2022 $100.00
  • Kevin Theodore October 2022 $50.00
  • Seth Allen September 2022 $50.00

$1,290.00

achieved

$650.00

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