Candi DiMarzio of the Neuroacanthocytosis Advocacy USA board of directors reports on a recent survey she conducted of NA patients.

Patient Advocacy Organizations Seek Additional Trustees. Are you an advocate for all things neuroacanthocytosis? Do you have the time and gifts needed to serve a patient advocacy organization? If so, then read on...

Dr. Adrian Danek shares news of recent virtual communication measures and announces the next virtual VPS13 forum to be held on March 28, 2022.

This issue we feature Dr. Amber Tetlow, a fairly new and welcome addition to the NA community. She is currently working on the Neuropathology of Neuroacanthocytosis project at the Icahn School of Medicine at Mount Sinai.

Speech Therapist Jacqueline McIntosh shares valuable communication tips for people with NA.

Mike Koutis has VPS13A, what we used to call ChAc. He writes from Winnepeg, Manitoba, Canada about a new tool he is testing that is dramatically improving his ability to communicate with others.

McLeod syndrome patients typically have the ultra-rare KX- blood type. Recently, to help promote the worldwide need for the blood type, Mark Williford was invited to help OneBlood in Orlando, Florida share the importance of making autologous donations.

Neuroacanthocytosis Advocacy USA (NA-USA) was pleased to publish its very first annual report in January, highlighting accomplishments of its first full year of operations as a nonprofit.

Alex Irvine, an NA patient in London,  shares her correspondence with Manon Sauvageu, an NA patient in Canada.

Alex Irvine (right) shares her experience of joining a choir that brings joy to Movement Disorder Patients.

McLeod syndrome patient Mark Williford of Melbourne, Florida finds water aerobics classes to not only be beneficial to his health, but a source of great joy. Mark swam competitively in high school, and swimming has always been an important part of his life. Most weeks Mark heads to the pool for classes at least twice a week.  The buoyancy of the water supports a portion of his body weight, making it easier to move in the water, improve flexibility, and strengthen his muscles. 

Bob Metzger, a board member of NA-USA and a McLeod syndrome patient, shared these beautiful photos of a recent canoe outing with friends in Minnesota and how he likes to spend his leisure time.