Move for Myhre 2025
Move for Rare |Move for Research |Move for Hope
Save the Date - September 27–28, 2025
#Move4Myhre is more than a fundraiser. It's a global movement of hope, action, and community. Every September, families, friends, supporters, and rare disease advocates come together to raise awareness and critical funds for Myhre Syndrome. Together, we walk, run, dance, bike, hike, and MOVE to support those living with Myhre and accelerate the path toward treatments and a cure.
How to Get Involved
Step 1: Register to Move
Set up a personal fundraising page and invite your network to support the cause. Every dollar raised brings us closer to breakthroughs. Use the link above to get started!
Step 2: Choose Your Move
Pick any activity that gets you moving—walk, run, dance, swim, cycle, or create something totally unique!
Step 3: Spread the Word
Share your journey on social media using #Move4Myhre and tag @MyhreSyndromeFoundation. Inspire others to move, donate, or learn more.
The Stahl family
“Each year, we hold a bake sale and lemonade stand for Move for Myhre, as our son Clark has Myhre syndrome.
Clark's older sister helps bake, package, and manage the sales. The local response is always overwhelming. People drive over just to meet us and donate.
Our little bake sale/lemonade stand has raised over $3000 in the last two years. Our advice is just to go for it; people want to help and support.”
The Becknell family
“We ran a half-marathon but I really think that our social media shares about Myhre and Alex were what helped the most.
Just letting people know what exactly can happen with Myhre and having Alex talk in videos made the most impact. The ones with him talking were the most successful for our fundraising.
Sharing our story not only raised awareness but also put that personal experience out there, and we raised $6732!”
Move for Myhre - Bake Off
There is always time for cake, and what better way to bring a community together than over a sweet treat that’s baked with love? So why not try a bake sale?
This year, we have some yummy recipe ideas that are not only delicious but also use natural and low-sugar alternatives.
Thank you to Becky Allan, who provided the recipes for our 2022 campaign and are still favorites today! Take a pic and tag us with your finished bakes #moveformyhre
A Cake for All Occasions
Shortbread
Low Sugar Flapjacks
Healthier Option Oatmeal & Raisin Cookies