In the last issue of NA News we were pleased to report on the publication of the first scientific article related to the Neuropathology of Neuroacanthocytosis project at the Icahn School of Medicine at Mount Sinai. Dr. Ruth Walker now shares news on a second publication.

Ginger Irvine, Chair and Co-Founder (with her late husband Glenn) of The Advocacy for Neuroacanthocytosis Patients received the Public Service Award by the International Parkinson and Movement Disorder Society (MDS). The award was presented on 27 August at the 2023 International Congress Welcome Ceremony in Copenhagen, Denmark.

[Ginger pictured at right with daughter Alex]

Adrian Danek helps us understand the reasons behind the changing nomenclature in this field of ultra-rare disease. If you are confused about why XK is rapidly replacing McLeod syndrome and VPS13A is replacing chorea-acanthocytosis (ChAc), then this is the article for you. 

Linking the Patient and Medical/Science Communities, the recent VPS13 Forum was hosted by The Advocacy and by NA-USA on July 31st. Read on to learn more about our VPS13 forums in general, and details on this one.

The Advocacy for Neuroacanthocytosis Patients and Neuroacanthocytosis Advocacy USA are both undergoing updates to their respective websites. Read on to discover how you play a critical role in this process.

Susan Wagner, president of Neuroacanthocytosis Advocacy USA (NA-USA) shares her brother Mark's experience with his Medic-Alert bracelet.

Bob Metzger, a board member of NA-USA and XK patient, shares highlights of his attendance at the 11th International Meeting on Neuroacanthocytosis Diseases. 

XK patient Mark Williford and Professor Ruth Walker joined forces to present on neuroacanthocytosis diseases and XK in particular for Grand Rounds at the University of Florida's Norman Fixel Institute for Neurological Diseases.

Patient Alex Irvine enjoys expressing her creativity.