Move to Cure STXBP1 Disorders
WHEN: Anytime at the end of September!
WHERE: Anywhere you can get moving!
Register and create a team below
Create a custom team t-shirt for your team here!
Wondering What the Move to Cure Challenge is All About?
We are parents, grandparents, family & friends just like you, who have been handed extraordinary circumstances and are working to “Move to Cure” STXBP1 Disorders. The purpose of this challenge is to raise awareness of STXBP1 Disorders, fundraise for STXBP1 research, and bring the community “together” for an important cause and some fun! Families and friends are encouraged to walk, run, hike or bike right in their own neighborhoods. Keep it simple, and get Moving for a Cure! Start a Team, Join a Team, or you can go solo! Teams with 5 or more members will receive an exclusive Move to Cure STXBP1 banner...while supplies last! Our goal is to raise $100,000...with your help we know we can get there!
About the Move to Cure Challenge
This challenge is the grand finale for STXBP1 awareness month in September. We want you to move with a purpose and help us take steps towards a cure.
Take lots of pictures and share them with us on all your social media sites by using the hashtag #move2cureSTXBP1.
Fundraising made easy!
We encourage families and supporters to fundraise. We raised over $65,000 last year! People are willing to give to a cause that is personal to them and to which they have a connection, so share your family’s story or your connection to STXBP1 in your fundraising campaign! Upon registering, you will have access to fundraising templates, which can be customized.
Fundraisers can also be started directly from our Facebook page here .
Corporate sponsorships are also available. Contact heather.jones@stxbp1disorders.org for more information on how your organization can participate.
Here's what we need from STXBP1 Families & Supporters:
Register your family for the Move to Cure Challenge when registration opens and share with supporters
Invite friends and family to join the challenge!
Host a local gathering and move event together in September
Share pictures online tagged with #move2curestxbp1
Race Origins: Emma Rose
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.
