Myhre Syndrome Foundation

We're getting close to our end-of-year target! Can you help us reach it by the end of the year? Your support will allow us to fund more research to find treatments, host events, and provide support materials so that people with Myhre feel empowered about their healthcare, regardless of location. https://lnkd.in/g_Nw_FhG

Myhre Syndrome is rare, but your impact doesn’t have to be. Your donation funds research, support, and a future filled with hope. Every dollar matters. Donate today: https://lnkd.in/g_Nw_FhG #HopeIsntRare #RareButMighty

We’re thrilled to announce the opening of a dedicated Myhre Syndrome Clinic at Stanford University’s Cardiovascular Connective Tissue Clinic in California, USA. This clinic brings together experts in genetics, cardiology, and other specialties to provide personalized care for patients and families while advancing research into Myhre syndrome. Read more here - https://lnkd.in/ggTZufJk

Hope Isn’t Rare At the Myhre Syndrome Foundation, we’re constantly inspired by the incredible people at the heart of our mission: the children, the adults, the families, and the advocacy driven by a community that’s small but mighty. Myhre syndrome may be very rare, but the hope we’ve created together feels anything but. Every dollar you give fuels life-changing progress—for individuals, for families, and for every step forward toward treatments and, one day, a cure. Join us. Be part of the hope. Because while Myhre syndrome may be rare, hope isn’t. https://lnkd.in/dChtF2B #HopeIsntRare #MyhreSyndrome #RareButMighty #TogetherForACure

Join us on Saturday, 23 November, for our next MSF Family & Patient Research Q&A session. Join us for a genetics refresher, gene editing insights, and a recap of last month's neurodevelopment call, as, unfortunately, the recording failed! Sign up at https://lnkd.in/gnZTGQb2 #myhresyndrome #myhrefamily

We are deeply saddened to share the news that Angel, 20, has passed away today. As a mark of respect, we have changed our logo to black. Her mom, Sheri, shared the following. “Angel is the youngest of four. She was always in the best spirits no matter what she was going through in life. She made the whole family laugh with her uplifting personality and love for each of us. She loved music, arts and crafts, and Pokémon. There is a large hole in our hearts today, and she will be dearly missed.” At MSF, we will continue to work tirelessly in Angel’s name and for all those who have gone too soon. Our hearts are with Angel and her family.

We are delighted to share the latest Myhre Syndrome Patient Registry data and huge thanks to the Scientific Committee for creating the report. The report includes demographic information and key symptom updates. It represents an incredible 22 countries, and almost half of the entire Myhre syndrome reported population! Remember your data is de-identified. By checking the box to allow MSF to view your updates, we can make reports like this, getting the information back into the hands of patients. View the full report on our website, and if you have any questions, please let us know. https://lnkd.in/gqgjtxFE

Join us on Saturday, 26 October, for our next MSF Family & Patient Research Q&A session. We'll discuss "Beyond TGF-beta: How SMAD4 Shapes Puberty, Autism, and Learning in Myhre Syndrome." Join us in exploring the role of SMAD4 in the brain and endocrine system, focusing on how other receptors influence key manifestations of Myhre syndrome. From puberty to autism, bone growth, and cognitive functions like learning and memory, we’ll explore the impacts that go beyond TGF-beta pathways, such as fibrosis. You’ll leave the session learning more about the importance of understanding how other receptors contribute to the complex presentation of Myhre syndrome. Sign up at https://lnkd.in/gnZTGQb2

Join us on Saturday, 26 October, for our next MSF Family & Patient Research Q&A session. We'll discuss "Beyond TGF-beta: How SMAD4 Shapes Puberty, Autism, and Learning in Myhre Syndrome." Join us in exploring the role of SMAD4 in the brain and endocrine system, focusing on how other receptors influence key manifestations of Myhre syndrome. From puberty to autism, bone growth, and cognitive functions like learning and memory, we’ll explore the impacts that go beyond TGF-beta pathways, such as fibrosis. You’ll leave the session learning more about the importance of understanding how other receptors contribute to the complex presentation of Myhre syndrome. Sign up at https://lnkd.in/gnZTGQb2

Joining the Myhre Syndrome Patient Registry is so important. Learn more here. https://lnkd.in/gmKRrmK2