Amy Clugston

Patient Leader

I have been an active parent leader serving in many capacities within my local community, throughout the state of Michigan and both nationally and internationally for the past 20 years. My outreach and advocacy started just 3 years after my daughter was born with multiple congenital anomalies which began our 18 year diagnostic odyssey. My commitment to be a voice for parents started as a parent representative on the Local Inter-Agency Coordination Council for Early On, a service that continued beyond 10 years. My service extended to numerous boards and committee’s including Founder of Syndromes Without A Name USA (SWAN USA), Co-Founder of DYRK1A Syndrome US, DYRK1A Syndrome International Association Coordinating Member, Parent to Parent of SW MI Board Member, Michigan Alliance for Families Board Member, Midwest Genetics Network Region 4 Family Representative, Allegan County Community Mental Health Board Member and several sub-committee’s for specific projects. My voice comes from a personal perspective as well as from other parents who have shared their experiences with me through my role of collaborating, supporting and mentoring families. A good portion of my time in those 20 years was focused on the undiagnosed community through my role at SWAN USA. However, with the diagnosis of a newly identified syndrome my focus has gradually shifted to the community and organization for DYRK1A Syndrome. A community that started with only 2 families in 2014 and has grown to 300 in just 5 years later. This large growth for a rare condition has confirmed the need for me to step up and lead the community forward.


Otsego, MI


Best in Show: Community
Amy Clugston

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