Joy Willard-Williford shares results of fundraising effort in memory of her late husband, Mark Williford, an XK patient.

New research from Puerto Rico identifies three recurring genetic variants (‘founder mutations’) in VPS13A disease, helping explain its higher‑than‑expected prevalence and supporting earlier diagnosis for families. 

We’re excited to launch our new monthly giving program, a way for supporters to help us build a sustainable future for the advocacies. 

We're delighted to announce that the proceedings from our 12th International Symposium in Lausanne have been published in Tremor and Other Hyperkinetic Movements Journal. 

In January, over 40 researchers, clinicians, and community members gathered online for the 24th VPS13 Forum, moderated by Professor Ruth Walker. 

We are pleased to share an update on the Research Advisory Committee (RAC), which continues to play a vital role in guiding the scientific direction of Advocacy for Neuroacanthocytosis Patients and NA Advocacy USA. 

Nathan, who lives with XK disease, recently was called upon to donate his rare blood for the benefit of an infant.

For the past several years, Drew Smith, a patient with VPS13A disease, has sponsored a fundraiser in conjuction with the annual Super Bowl. Read on to see this year's results.

In September 2025, the Advocacy for Neuroacanthocytosis Patients (NA Advocacy) launched an  ambitious three-year Strategic Plan, setting out a clear roadmap to strengthen support for our community, enhance awareness, and fund vital research into VPS13A and XK diseases. 

In our previous issue we shared all about Sheila’s open garden in August 2025. And we have even more exciting news! 

Advocacy for Neuroacanthocytosis Patients is opening applications for new trustee roles.