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 September 28th!
How we did last year
Last year’s annual STXBP1 5K, along with our first official virtual 5k, raised almost $10,000 for the Foundation and brought many members of the local and STXBP1 community together. There were memories made that day and lots of great connections. The race participants were introduced to some of our STXBP1 family in person as well as through personal thank you notes from some of the kids. A few of the medal winners chose to send their medal to “their” child and the joy that brought those children and their families was priceless. It was meaningful for everyone who attended.
Details for this year
- Saturday, September 28, 2019
- Venue: Devola Park
- 820 River Road, Marietta, OH 45750
- Date: Saturday, September 28, 2019, 8am – 12pm
- Packet Pickup at the park pavilion Friday, September 27th from 4:30pm-6:30pm and beginning at 8am Saturday, September 28th
- Registration Begins at 8:00am, Race Starts at 9:00am
My name is Emma Rose. I am currently 10 years old, cannot walk or talk, and continually struggle to gain complete, long-term control over my seizures. This past year has been especially difficult with my family seeking a second opinion on seizure medications from a specialist in Memphis, to no avail. 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 and this year, I discovered I love telling jokes and making people laugh. 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, determined to find 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 3rd 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.
Can’t make it to Marietta for the 5k? Busy on Saturday, September 28th? Perhaps you don’t like to run or walk? Or maybe you would like to have your own event at home? Check out our online virtual event here and set your own place, pace, and miles while still supporting the STXBP1 community: https://runsignup.com/Race/OH/Marietta/STXBP1MovingforaCure
For questions or more information about the run and walk, email: Jennifer.firstname.lastname@example.org
Register online here: