Move to Cure STXBP1 Disorders
About the Move to Cure Challenge
September is always STXBP1 Awareness Month, and this past September was also the launch of our 8th annual Move to Cure STXBP1 Disorders challenge fundraiser. This year we added some exciting updates to the annual event.
We were thrilled to “Shine a Light on STXBP1” as we participated in our annual Move to Cure STXBP1 Disorders event. Along with this year’s theme we have refreshed the shirt design with a fun new look. Don’t worry, team shirts can still be customized with your team name.
But that’s not all that changed … we also extended the Move to Cure timeline … still anchored in September ... but extending to Giving Tuesday on December 3rd. We hope this extended timeline will provide more opportunities for people all across the US and all over the world to “Shine a Light on STXBP1”.
We have a big goal this year to raise $100,000 … but we know that our INCREDIBLE community is up for the challenge.
Here are detailed instructions for Team Captains to set-up their teams.
Be sure to share your pictures with us on social media & use the hashtag #move2curestxbp1 in your posts. We can’t wait to see all of the teams across the world Moving to Cure STXBP1!
Registration is still open.
Let’s keep Moving!
Set Up Your Custom Team Shirts and Other Apparel
It’s easy to get your Team’s gear. Just go to Bonfire and follow our easy step-by-step instructions to help you set up your own Team’s personalized shirts and organize your own store page.
Helpful hints for Setting Up Your Custom Shirt Site:
Select Option 1 for adult & youth sizes or Option 2 for toddler tees
Add your custom shirt links to your Team Registration Page
Race Origins: Emma Rose and a 5K
The “Move To Cure” STXBP1 Disorders event has evolved from one of our very first fund raisers which was a 5K run in October 2017 in Ohio. It was organized especially for Emma by her mom, Jennifer. Here is Emma’s story.
My name is Emma Rose. I am currently 14 years old, cannot walk or talk, and continually struggle to gain complete, long-term control over my seizures. The past several years have been especially difficult with my family seeking a second opinion on seizure medications from a specialist in another state, to no avail, and a failed VNS surgery. I work hard and make advances developmentally when the seizures allow me the time, but sadly, can lose much of that hard won progress when my seizures are especially severe. It took many years to find a communication device that worked for me because I have a significant tremor and weakness 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 I am doing that at record speed. 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 at that time. My doctors had never heard of it and the research community had only just 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.
