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Survey Says...

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

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Casting the Leadership Net

Board membersPatient 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...

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RESEARCH UPDATE

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

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Featured Researcher - Dr. Amber Tetlow

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.

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Communication Tips for NA Patients

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

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Mike Speaks Out

Mike KoutisMike 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.

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Autologous Blood Donation to be Featured by Blood Bank

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.

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Neuroacanthocytosis Advocacy USA Publishes First Annual Report

2021 Annual ReportNeuroacanthocytosis 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.

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Patient Pen Pals

Fannie (left) and ManonAlex Irvine, an NA patient in London,  shares her correspondence with Manon Sauvageu, an NA patient in Canada.

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Roll Over Beethoven

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

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Aquafit Classes Benefit McLeod Syndrome Patient

Mark WillifordMcLeod 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. 

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Somewhere Down the Lazy River

Bob MetzgerBob 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.

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In this issue
TOP STORY
Survey Says...
Casting the Leadership Net
RESEARCH UPDATE
Featured Researcher - Dr. Amber Tetlow
Communication Tips for NA Patients
Mike Speaks Out
Autologous Blood Donation to be Featured by Blood Bank
Neuroacanthocytosis Advocacy USA Publishes First Annual Report
Patient Pen Pals
Roll Over Beethoven
Aquafit Classes Benefit McLeod Syndrome Patient
Somewhere Down the Lazy River
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