The two advocacy organizations, The Advocacy for Neuroacanthocytosis Patients (NA Advocacy), a UK registered charity, and Neuroacanthocytosis Advocacy USA (NA-USA), a US 501(c)(3) non-profit organization, work closely together towards their common purposes to provide support to patients with VPS13A or XK disease and their families and caregivers, to foster and fund research, and to promote awareness of the two diseases. In fact, they refer to one another as “sister organizations.”

Recently, the two organizations signed a formal Memorandum of Understanding (MOU) to seal their commitment to the relationship. The MOU provides a mechanism for both advocacies, in furtherance of their own charitable mission and in compliance with the rules and regulations of both countries, to periodically transfer funds from one organization to the other. This is helpful when both organizations contribute to funding the same research project, but only one organization is the lead entering into a legal agreement to grant funds to another entity for research purposes.

NA-USA was founded in 2019 with the encouragement of NA Advocacy, founded in 2002. From the initial founding of NA-USA, the two organizations have worked closely together.  Ways in which this plays out include, but are not limited to:

• Ginger Irvine, president of NA Advocacy, is a dual citizen of the UK and the US. She serves on the board of NA-USA and has done so since its founding.
• Joy Willard-Williford, president of NA-USA, attends NA Advocacy board meetings as an observer.
• Both organizations make possible the NA News, with the NA Advocacy being the owner/publisher, its charity manager, Despina Dinca, serving as key writer, and Joy putting it all together while Ginger and Despina give final editorial approval.
• Both organizations participate in planning the bi-annual neuroacanthocytosis symposium, with focus on the patient and caregiver track.
• Both organizations work to promote the VPS13 forums.
• In December 2024, the two boards plan to meet virtually for a “meet and greet.” It is anticipated that, going forward, the two organizations will be looking to do strategic planning around their common purpose and mutual futures.

Individually, each organization manages its own social media and web page, raises its own funds, and exists as its own separate legal entity, among other things.

Both boards are always looking for new members committed to furthering their purpose. Contact Ginger at ginger@naadvocacy.org or joy@naadvocacyusa.org if you are interested.