Myhre Syndrome Foundation

Myhre Syndrome Foundation We are dedicated to serving Myhre Syndrome families, funding vital research and finding answers.

We're holding the Young family in our hearts as we return to our community updates and holding space for you all as well...
06/17/2026

We're holding the Young family in our hearts as we return to our community updates and holding space for you all as well. Please reach out if you need support; we're here for you.

Today, the Myhre Syndrome Foundation team and community mourn the loss of Anna Young, 28, who passed away on 3 June 2026...
06/04/2026

Today, the Myhre Syndrome Foundation team and community mourn the loss of Anna Young, 28, who passed away on 3 June 2026. Anna’s mum, Kathy, is a co-founder of MSF, who, in 2019, along with the Smith family, started this incredible organization.

Anna loved life and lived it to the full. She was very active and, since age 8, had been part of Special Olympics in bowling, track and field, soccer, golf, pickleball and bocce. In 2022, Anna advanced to the USA Games, traveling to Orlando, Florida, and bringing home gold in bowling. She qualified for the 2026 USA Games and was planning to compete in Minneapolis in a few weeks.

Anna loved living an independent life and working in a middle school cafeteria, where she was cherished by all. Her passion for cooking meant the family was regularly treated to Anna’s recipes each weekend. At home, she was a proud cat mom, and each of her cats' names started with a P! For the MSF art auction in 2025, she drew portraits of cats Pickle and Pepper, and crafting was a big part of her life. Anna also participated in other Myhre community events, including the virtual conferences and coffee hours, and attended the in-person conference in 2024.

Kathy has been a constant source of strength for everyone in the MSF community, and Mary, Anna’s sister, joined the MSF board in 2024. Her brother, Henry, served as an early board member and played a key role in establishing MSF's legal and organizational structure. Kathy, Mary, and all of Anna’s family and friends, we are thinking of you and mourn alongside you. We will continue to fight for answers in Anna’s name.

What does a bakery have to do with Myhre research? More than you'd think! The MSF has hit a major milestone - our pre-cl...
06/03/2026

What does a bakery have to do with Myhre research? More than you'd think! The MSF has hit a major milestone - our pre-clinical in vitro platform is ready, and we're using a baking analogy to break down exactly what that means for potential Myhre treatments. Full article here - https://www.myhresyndrome.org/news/2026/5/19/pre-clinical-platform

The Myhre community is growing every day! We'd love to know where in the world YOU are tuning in from? Comment below and...
06/01/2026

The Myhre community is growing every day! We'd love to know where in the world YOU are tuning in from? Comment below and let's see how far we reach!

Myhre syndrome is one of the rarest conditions in the world, and the science behind it is just as remarkable. SMAD4 gain...
05/29/2026

Myhre syndrome is one of the rarest conditions in the world, and the science behind it is just as remarkable. SMAD4 gain-of-function variants are the only known molecular cause of Myhre syndrome - and conversely, Myhre syndrome is the only clinical syndrome associated with SMAD4 gain-of-function variants.

That one-to-one relationship is incredibly rare in genetics. It means every step forward in understanding SMAD4 gain-of-function is a step forward specifically for this community. Your diagnosis is unique. So is the science fighting for you.

Say hello to Felix and his family (Ivana, Oscar, James (holding Felix), and Auntie Ines. They are the family behind MSF ...
05/27/2026

Say hello to Felix and his family (Ivana, Oscar, James (holding Felix), and Auntie Ines. They are the family behind MSF Australia, and we can't wait to tell you more about the work they have been doing since they started the charity in 2025. We're in this together and all working hard to raise awareness and fund research.

Community Monday! We want to hear about the hobby or interest that makes you - or your loved one - light up! Like Rafael...
05/25/2026

Community Monday! We want to hear about the hobby or interest that makes you - or your loved one - light up! Like Rafael here, a member of our Myhre community, we love getting creative with a paintbrush or pencil. What about you?

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