We are pleased to announce the founding of Neuroacanthocytosis Advocacy USA, Inc., a newly designated nonprofit organization dedicated to providing support to patients - and family and carers of patients - with neuroacanthocytosis-related diseases.
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 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 (middle photo), Dr. Ruth Walker of New York, and Joy Willard-Williford of Florida (bottom 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, including making an application to the Internal Revenue Service to be a 501(c)(3) organization, allowing donations to the organization to be tax-exempt. Stay tuned.