2nd Annual STXBP1 5k Run and Walk- Marietta, Ohio

Wondering what the STXBP1 5K is all about?
We are moms and dads, sisters and brothers, and Grandmas and Grandpas just like you who have been handed extraordinary circumstances and who are working together to lead the charge for a cure. Last year, we had race participants all over the US from California to Philadelphia to here in Marietta, Ohio. Come join us either in person or virtually on October 13th!

How we did last year
Last year’s first annual STXBP1 5K raised $2,000 for the Foundation and brought many members of the local and STXBP1 community together. There were many memories made that day and lots of great connections. Quite a few people and businesses have offered their assistance to help make this year even better.

Details for this year

  • Saturday, October 13th, 2018
  • Venue: Devola Park
  • 820 River Road, Marietta, OH 45750
  • Date: Saturday,  October 13th, 2018, 8am – 12pm
  • Packet Pickup at the park pavilion Friday, October 12th from 4:30pm-6:30pm and beginning at 8am Saturday, October 13th
  • Registration Begins at 8:00am,  Race Starts at 9:00am
  • Submit Your Application Now

 

 

 Emma’s Story
My name is Emma Rose. I am currently 9 years old, cannot walk or talk, and continually struggle to gain complete, long-term control over my seizures. I work hard and make advances developmentally when the seizures allow me the time, but sadly, lose much of that hard won progress when they return or an illness strikes. It has taken many years to find a communication device that works for me because I have a significant tremor in my right hand and limited fine motor control in my left. My top priority is mastering the use of my eye gaze communication device. I began having seizures immediately after birth, infantile spasms were added to the mix when I was just 2 months old, and delayed development followed closely behind. Finally, when I was 5 years old, I was diagnosed with the cause of all my medical challenges, a change in the STXBP1 gene. Unfortunately, that was about all they could tell my family about my diagnosis. My doctors had never heard of it and the research community had only begun to learn about it. We quickly found a group of families online whose children shared my diagnosis and so began the small group of passionate families searching for a treatment, longing for a cure, and fervent in raising awareness among peers as well as the medical community.

The Goal and Purpose of the STXBP1 Foundation and 5k Fundraising
The 2nd annual STXBP1 5k will help fund research as well as aid the STXBP1 Foundation in continuing its goal of spreading awareness. We currently have researchers working on specific areas of learning about and conquering STXBP1. We want to help keep their momentum moving forward so we don’t lose the valuable work they have already done. Updates on research will be posted on this site. Each time STXBP1 makes it into the news, it seems more families who have been touched by STXBP1 personally, find us. They are always relieved to finally discover their home, the place their child and family can feel as if they belong and where other parents understand on a deep level the many challenges, heartbreak, and joy this journey holds. This is half of our purpose in pushing to get STXBP1 out there as much as possible. The other half is raising awareness among medical professionals, hospitals, and neurology clinics. Our hope here is that this will increase the rate of diagnosis and help diagnose sooner, as well as give doctors the tools to provide their patients with the necessary information and support they need once they receive their diagnosis.

For questions or more information about the run and walk, email: fsptjennifer.clatterbuck@gmail.com

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