STXBP1 5k- Marietta, Ohio

The 1st Annual STXBP1 5k Run and Walk- Marietta, Ohio

Saturday, October 21st, 2017

Venue: Devola Park 

820 River Road, Marietta, OH 45750

 

Date: Saturday,  October 21st, 2017, 8am – 12pm

Packet Pickup at the park pavilion Friday, October 20th from 4:30pm-6:30pm and beginning at 8am Saturday, October 21st.

Registration Begins at 8:00am,  Race Starts at 9:00am

 My Story

My name is Emma Rose. I am currently 8 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

This 1st 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

Race application:

STXBP1 5k race application

Find us on Facebook:

https://www.facebook.com/events/247070289115333

A HUGE thanks to our most generous sponsor, FHL Bank of Pittsburgh. Thank you for helping us make this happen!