We are pleased to announce the founding of Neuroacanthocytosis Advocacy USA, Inc., a newly designated nonprofit organization dedicated to providing support to patients with neuroacanthocytosis-related diseases and their family and carers.
The organization will also promote awareness of these ultra-rare diseases and actively support research. This is the first such organization in the United States and it will be able to seek US-based grants.
Based in Florida, the organization's founding board members include a patient, family members of patients, and a researcher/physician.
They are Susan Wagner of South Carolina (top photo), Bob Metzger of Minnesota (lower photo), Dr. Ruth Walker of New York, and Joy Willard-Williford of Florida (cover photo).
Ginger Irvine is also on the board and provides a critical link to NA Advocacy. It is anticipated that the two organizations will work closely together to further each other's mission.
There is much work still to be done; However the application to the Internal Revenue Service to be a 501(c)(3) organization has just been accepted which allows donations to the organization to be tax-exempt. Stay tuned.