For more than twenty years, the village of Hawarden and the surrounding North Wales community have come together in support of NA research, thanks to the remarkable dedication of Gill and Gordon Parry. 

We are pleased to share an important step forward in our long‑term goal of building a robust, secure, and patient‑centred registry for VPS13A and XK diseases. 

This spring, we were contacted by Huma Baig, one of six siblings from a close‑knit family living in the UK.

Three of the siblings, Somara, Javad, and Khurram, have been diagnosed with VPS13A disease. Their story is one of resilience, love, and unwavering determination in the face of challenges that no family should have to face alone. 

Veronica Thomson is a VPS13A diagnosed patient who lives in the USA with her beautiful family. This is her story. 

Neuroacanthocytosis Advocacy USA, Inc. has a lot of news to report. Read on and learn more.

Sheila Averbuch’s Mercat Cottage Garden has long been more than a beautiful space; it has been a place where creativity, generosity and advocacy meet. 

This year, the NA Advocacy and NA Advocacy USA are proud to continue funding two important projects that reflect our long‑term commitment to both scientific discovery and practical diagnostic support for VPS13A and XK diseases.  

Roxanne Lestrange, Director of Philanthropy and Operations for the Community Foundation of Brevard in Melbourne, Florida, offers a Planned Giving 101 tutorial. Please note that the article is written from an American perspective, but most of the concepts presented are universal. As always, consult your own financial advisor or attorney on these matters. We encourage you to keep The Advocacy for Neuroacanthocytosis Patients (based in London) and Neuroacanthocytosis Advocacy USA, Inc. in mind when creating your legacy.

The 25th VPS13 Forum took place on 27 April 2026, moderated by Dr Kevin Peikert along with Professor Ruth Walker and Professor Adrian Danek.

We are starting a series of articles designed to support our readers in understand what is going on as new therapies emerge in the research world.