We’re excited to launch the very first weekend dedicated to Myhre Syndrome awareness and fundraising. Each year at the end of September we’ll be spreading the word and uniting as an international rare community.

There are so many ways you can get involved, and it’s so easy to set up a fundraising page through our very own platform - just click here

· Is there a physical challenge you’d like to take on?

· Or is baking and a bake sale more your thing?

· Why not hold a karaoke or dance party?

· Could you meet up with other Myhre families and individuals in your region, or online?

Or simply use this weekend to raise awareness, because anything you do will be making a huge difference.

Often with a rare community it can feel like you’re asking the same people for funds so instead perhaps a family member or friend would take on a challenge to raise money for Myhre. We want to extend that network so as many people as possible know about Myhre and the communities collective cause of raising funds for much needed research.

Don’t worry if this weekend is already booked up for you, simply pick a date that suits you to complete your challenge and instead on the Move for Myhre weekend show us what you got up to by using our hashtag #moveformyhre