Sally and Chris rode 50 miles and raised over $1500 on the Move for Myhre weekend last year. Can you create a fundraiser and help us raise funds to support vital research and community outreach.  Sign up here - give.classy.org/moveformyhre23  #MoveforMyhre

Have you got your copy of the Myhre Syndrome Foundation Research Roadmap yet? It sets out our research strategy over the next five years and takes you through our plan, process, and research goals in more detail. Download today!  myhresyndrome.org/research

Hey everyone! It's time for another MSF Coffee Hour chat this weekend! Come join us to make friends - Holli and Patti met through Myhre syndrome and have not stopped having adventures ever since!  myhresyndrome.org/events

MSF International Virtual Conference 2023 - Saturday 14 October - What Questions Do You Have? We're holding a live Q&A panel session with Myhre doctors. Submit your questions to [email protected]  Tickets available in August.

Myhre syndrome is complex, and it takes time to learn and understand the many symptoms.  We've created a video library where Myhre experts talk you through many topics, so you can learn at a pace that suits you.   myhresyndrome.org/videos

"In thirty years of wearing hearing aids, I have never had both malfunction at the same time. Until now."   Read how Patti experienced silence and learn more about the process of setting up hearing aids.  myhresyndrome.org/myhreandme/pat…

We are delighted to welcome Elise Wulff as a speaker at our MSF International Virtual Conference on 14 October.  Elise will be guiding us on a number of tools that can help with Executive Functioning, and we can’t wait to see her presentation.

One year to go! On this day in 2024 we’ll be together at the first ever in-person Myhre Syndrome Foundation conference at Children's Hospital of Philadelphia. Join us on 26 & 27 July 2024 for talks with Myhre experts and much more!

Join us at the Myhre Syndrome Foundation Virtual Conference on 14 Oct, where Mark Lindsay will be presenting the latest research on the cardiovascular manifestations of the Myhre mouse model. give.classy.org/msfvirtual23

For our friends who aren't part of the Myhre family, we've got an extra sprinkle of excitement just for you! 🎉 Introducing the Myhre Super Supporter Raffle! 🌟 You can snag a raffle ticket for our virtual conference for just $10. give.classy.org/msfvirtual23

Calling all rare disease researchers, on 14 October, hear from Bert Callewaert and @MarkELindsay, who will be giving updates on connective tissue research in zebrafish and mouse models. give.classy.org/msfvirtual23 email [email protected] for a discount code.

Interested in #connectivetissue #fibrosis #rarediease #smad4? Join us on October 14th for the latest updates from Myhre syndrome experts. give.classy.org/msfvirtual23

Move for Myhre 2023 was incredible! Check out the video and see the fantastic efforts undertaken by all. It was a bumper fundraising event and our best yet - raising over $11,000! Thanks to all of you for your continued support. #moveformyhre

The shop is now open! We are thrilled to let you know that you can buy MSF t-shirts, hoodies, mugs, and bags! Every purchase you make gives us a % of the profit. As Clark demonstrates, we have sizes for children and adults. bonfire.com/store/myhre-sy…

Join us for a free interactive webinar on November 12th at 3:00 pm Eastern as we discuss Rare Connective Tissue Disorders from the patient's perspective. Myhre patients and caregivers will be eligible to receive a $50 gift card for attending! bit.ly/NovemberCONECT…

$100,000 in Funding for Myhre Syndrome Research Projects. - Basic Research to Uncover Cellular Mechanisms - Creating Human Cell Lines for Drug Discovery and Therapeutic Development - Identifying and Testing Potential Therapies Contact us at [email protected] #SMAD4

Kate Wears, our Executive Director, shares her experiences with parenthood and Myhre syndrome. katewears.substack.com/p/i-never-unde…

Tomorrow is Giving Tuesday; let’s make it a day to remember—an opportunity to rewrite the future for those affected by Myhre syndrome. Any donation really does make a difference to our small community. give.classy.org/givehope23

Join us this Giving Tuesday to help fund our mission to find treatments. We can't do it without your support - give today, and let's change the future for Myhre syndrome. give.classy.org/givehope23 #GivingTuesday #MyhreSyndromeResearch #CureMyhreSyndrome

If you have room on your list, we’d love your support in finding treatments for the Myhre community. give.classy.org/givehope23