About Myhre Syndrome Foundation

Myhre Syndrome Foundation (MSF) was founded in 2019 as a grassroots effort to provide resources and advocacy for Myhre families and support research funding and education within the medical community.

Meet the team - Staff & Board of Directors

Kate Wears - Director

Kate Wears - Executive Director

In 2022, we appointed our first Executive Director, Kate Wears, who has overall strategic and operational responsibility for the foundation, including programs, expansion, and mission execution.

Kate reports to the board of directors, who serve as a unique and meaningful resource and provide a caring and supportive community for Myhre syndrome families. The Board members, who all volunteer, oversee the organization's mission, goals, and activities, including strategic planning, fundraising administration, and financial management.

Click on a Staff or Board member to learn more about them!

Justin Smith - President

Justin Smith - Co-founder & Treasurer

Jessica Simkins - Director

Don Clark - Director

Don Clark - Vice-President

Stephanie Karatsinides - Director & Secretary

Sandy Taylor - Director

Kathy Young - Co-founder & Director

Ines White - Director

Ines White - President

Susan Murphy - Director

Mary Young - Director

Zac Burns - Director

Levi Holder - Director

Matt Kantor - 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)