Move to Cure STXBP1 Disorders
Let’s Trailblaze Together
Get Started with Your Move to Cure Campaign Fundraiser
You’re not just fundraising — you're trailblazing a path toward a cure for STXBP1 disorders. Whether your event is big or small, your efforts are part of something bigger — and we’re so grateful to have you on this journey.
Choose the Right Fundraiser for Your Team
Pick an activity that fits your team’s interests, energy, and community. Every team makes an impact in their own way:Active: Decide how your team wants to Move to Cure — host a 5K (in-person or virtual), go for a walk, ride bikes, or have a dance party
Creative: Plan a lemonade stand, art sale, or outdoor movie night
Inclusive: Organize a park playdate, scavenger hunt, or game night — great for all ages and abilities
Low-key: No event? No problem. Simply set up and share your team page to raise awareness and funds
Set Up Your Team Page on RunSignUp
Use the instructions HERE to create your team’s official fundraising page. This is your hub for donations and event info.Customize Your Team Shirt on Bonfire
Follow the instructions HERE to create your team’s custom shirt. Once it's ready, add the shirt link to your RunSignUp page so supporters can order and show their support.Order Your FREE Team Toolkit
Fill out this short survey HERE to receive your Move to Cure swag — including stickers, magnets, and wristbands. Note that a limited number of “Move to Cure STXBP1 Disorders” banners are available for new teams!Spread the Word: September 1 – December 2
Share your team page and event with friends, family, and your community. Invite them to join, donate, and help raise awareness for STXBP1 disorders.
Important Notes
Start early!
Toolkit orders and shirt deliveries take time.Make it your own.
However you choose to “Move to Cure,” your impact matters.We’re here to help …
Don’t hesitate to reach out if you need ideas or support.
About the Move to Cure Challenge
The STXBP1 Move to Cure event is the largest fundraising campaign run by the STXBP1 Foundation. We always launch this drive in September to coincide with STXBP1 Awareness Month and we run it through Giving Tuesday to give all our teams time to make their moves.
The 2024 event was our 8th annual Move to Cure fundraiser and we set a goal of raising $100K to help in our search for better treatments and an eventual cure for STXBP1-related disorders.
With over 30 teams participating from across the globe, we officially exceeded our goal and raised $104,369 last year alone!
We want to shout out a huge thank you to our AMAZING community for their active participation. We are so grateful for everyone’s hard work, dedication, and love.
Let’s all keep making our moves for every year’s Move to Cure campaign … and why not keep moving throughout the whole year.
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 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.
