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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

 

Dave Asinger, MD

Radiologist

Maple Grove, Minnesota

Advocate

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Sylvette Ayala-Peña, Ph.D.

Huntington's Disease Researcher

San Juan, Puerto Rico

Advocate

 

​Ginger Irvine, Director*

                                              London, UK

Founder, NA Advocacy

VPS13A Parent

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Julie Kerner, PhD, Secretary

Founder/Lead Consultant, Kerner Solutions LLC,

Waltham, Massachusetts

Advocate

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Robert Metzger, Treasurer*

Minneapolis, Minnesota

XK Patient

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Kim Thomson

Systems Analyst

Westerville, Ohio

VPS13A Family Member

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Susan Wagner, Vice-President*

Greenville, South Carolina

XK 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, President*

Melbourne, Florida

XK Spouse

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*Founding Board Member

Contact susan@naadvocacyusa.org or joy@naadvocacyusa.org

2285 Harlock Road, Melbourne, FL 32934

A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE FLORIDA DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE 1-800-435-7352 WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT OR RECOMMENDATION BY THE STATE. REGISTRATION #CH62785. 100% OF THE PROCEEDS BENEFIT THE MISSION OF NEUROACANTHOCYTOSIS ADVOCACY USA, INC.

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