Casting the Leadership Net

The Advocacy for Neuroacanthocytosis Patients, also known as NA Advocacy, calls them “trustees;” Neuroacanthocytosis Advocacy USA, also known as NA-USA, calls them “directors” or “board members.” Whatever the name used, these important individuals work together to accomplish the goals of their respective organizations. Both NA Advocacy, based in London, and NA-USA based in Florida, are looking for a few good individuals with a heart for finding a cure for VPS13A and McLeod syndrome and for supporting individuals with these disorders, and their families. 


At its most basic, to truly be an effective nonprofit trustee or board member requires having good character, a strong commitment to the cause, the gift of time, and a willingness to use personal and professional resources to advance the organization's mission.  If you would like to learn more about the role of a trustee/board member with NA Advocacy, please contact Ginger Irvine at For information on NA-USA, please contact Susan Wagner at or Joy Willard-Williford at


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