Neuroacanthocytosis Advocacy USA, Inc., was incorporated as a nonprofit organization in late 2019, and received its 501(c)(3) tax exempt status from the IRS in 2020. We are a very young organization, but share common goals with our elder "sister" organization - The Advocacy for Neuroacanthocytosis Patients - established in 2002. You will see the two organizations pool resources, ideas, and in general, work cooperatively with one another to raise awareness and work towards finding a cure for the neuroacanthocytosis diseases. Just imagine what we can achieve together!

Our Leadership

Candi DiMarzio, Director

Manassas, Virginia

ChAc Parent

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Ginger Irvine, Director

London, UK

Founder, NA Advocacy

ChAc Parent

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Robert Metzger, Director

Minneapolis, Minnesota

McLeod Patient

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Susan Wagner, President

Greenville, South Carolina

McLeod Carrier

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Ruth Walker, MD, PhD, Director

Mount Sinai School of Medicine

JJP Veterans Affairs Medical Center

Bronx, New York

NA Researcher/Clinician

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Joy Willard-Williford, Vice President/Secretary/Treasurer

Melbourne, Florida

McLeod Spouse