We’re proudly reaching a new milestone with the 20^th VPS13 Forum and we are glad to see that the conversations are continuing after almost four years – the exact anniversary will be on 3 May.

We are proud to announce our continued support of research on VPS13A disease at the University of Verona, Italy. 

Ruth Walker shares research news from the U.S. side of the Pond.

Also, we send a big thank you to Mrs D. Hughes and Mr & Mrs J. Hughes, friends of the Parrys who ran a creative fundraiser by selling Christmas cards handmade by them throughout 2024. They kindly donated the earnings to us. 

We concluded 2024 with a delightful and quite unique creative project, the book of “Cataclysmic Limericks” created by Alexandra Irvine. 

José Miguel is a newly diagnosed patient from Portugal, and he shared his journey with us and we’re delighted to share it with you. 

Gary Gans, a patient living with the ultra-rare VPS13A disease (one of the neuroacanthocytosis syndromes), embodies the spirit of advocacy. 

The board of directors of Neuroacanthocytosis Advocacy USA, Inc. (NA-USA) recently welcomed three new board members: Kim Thomson of Ohio, Dave Asinger from Minnesota, and Sylvette Ayala-Peña from Puerto Rico.