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