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
Ricky Ditzel, Director
Medical Student
Chicago, Illinois
Advocate
​
Ginger Irvine, Director
London, UK
Founder, NA Advocacy
ChAc Parent
​
Julie Kerner, PhD, Secretary
Founder/Lead Consultant, Kerner Solutions LLC,
Waltham, Massachusetts
Advocate
​
Robert Metzger, Treasurer
Minneapolis, Minnesota
McLeod Patient
​
Susan Wagner, Vice-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, President
Melbourne, Florida
McLeod Spouse