About Myhre Syndrome Foundation
Our Mission
The Myhre Syndrome Foundation, founded in 2019, is an international patient advocacy and research organization committed to bringing hope and improving the lives of those impacted by Myhre syndrome.
Supporting Patients & Families
We’re here to support the Myhre syndrome community at every step. Our programs and resources include:
Educational Materials: We create patient and family materials, including plain-language interpretations of research papers, to help families and caregivers understand Myhre syndrome and navigate the healthcare system.
Events and Conferences: Our events bring together patients, families, researchers, and healthcare providers for learning, support, and connection.
Support Groups: Whether in person or online, we offer spaces for families and individuals affected by Myhre syndrome to connect, share experiences, and find community.
Funding Innovative Research
We are investing in pioneering research to find better treatments and, one day, a cure for Myhre syndrome. This includes:
Building a Preclinical Hub: We’re creating an advanced hub of tools and tests that evaluate potential treatments using patient cell models. This hub allows researchers to submit drug candidates and gain insight into how the disease functions.
Exploring Small Molecules: Small molecules are tiny, carefully designed drugs that easily enter cells to target specific issues in the body. We’re testing new and repurposed small molecules to see if they can reduce symptoms and improve quality of life.
Advancing Gene Therapy: Gene therapy is an exciting area of science that seeks to repair or replace faulty genes. By addressing the underlying genetic causes, gene therapy could one day offer more targeted and effective treatments for those with Myhre syndrome.
Meet The Team - Staff & Board of Directors
Kate Wears - Executive Director
Armelle Pindon - Chief Scientific Officer
Click on a Staff or Board member to learn more about them!
Justin Smith - Co-founder & Treasurer
Jessica Simkins - Director
Don Clark - Director
Matt Kantor - Director
Kathy Young - Co-founder & Director
Zac Burns - Director
Mary Young - Director
Ines White - President
Susan Murphy - Director
The Board of Directors is supported by a Professional Advisory Board (PAB) made up of international doctors, healthcare professionals and scientists involved in research and treatment of individuals living with Myhre syndrome who give their time voluntarily to offer clinical and research-related advice to the foundation. The members of the PAB serve as a resource on scientific and medical issues including opinions on methods of managing and treating the syndrome and review of the foundation's literature to ensure that information is medically accurate as well as on issues related to advancing research, promoting awareness and supporting MSF programs.
Click on a PAB member to learn more about them!
Meet the team - MSF Professional Advisory Board (PAB)
