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Our Story

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

Ginger Irvine, Director

London, UK

Founder, NA Advocacy

ChAc Parent

Robert Metzger, Director

Minneapolis, Minnesota

McLeod Patient

Susan Wagner, President

Greenville, South Carolina

McLeod Carrier

Ruth Walker, MD, PhD, Director

Mount Sinai School of Medicine

JJP Veterans Affairs Medical Center

Bronx, New York

NA Researcher/Clinician

Joy Willard-Williford, Vice President/Secretary/Treasurer

Melbourne, Florida

McLeod Spouse

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