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
Ricky Ditzel, Director
Medical Student
Chicago, Illinois
Advocate
Ginger Irvine, Director
London, UK
Founder, NA Advocacy
ChAc Parent
Julie Kerner, PhD, Director
Founder/Lead Consultant, Kerner Solutions LLC,
Waltham, Massachusetts
Advocate
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