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2nd Paper Published Resulting from Neuropathology of Neuroacanthocytosis Project
NA-USA funded brain research continues to make progress
by Ruth Walker

Professor Ruth WalkerIn 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.

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Ginger Irvine Honored with Service Award
Presitigous Award Given by the Parkinson and Movement Disorder Society
by Despina Dinca

Ginger and Alexandra Irvine next to a finished puzzle (by Alex)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]

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Neuroacanthocytosis Syndromes at 70: A term to be Retired?
A Primer on Changing Nomenclature
by Adrian Danek

Professor Adrian DanekAdrian 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. 

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Report from 14th VPS13 Forum - July 31, 2023
Linking the Patient and Medical/Science Communities
by Despina Dinca

VPS13 Forum logo 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.

 

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Your Input Requested
Advocacy Websites Undergoing Review and Updates
by Despina Dinca

Despina Dinca, Charity Manager. We are looking for our audience's input in developing the new websites as mentioned in the artcileThe 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.

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Important Suggestion for XK Patients Regarding Blood Transfusions
A Message from Susan Wagner
by Susan Wagner

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

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A Patient-eye View
Bob Metzger Shares His Experience at the Recent International Meeting
by Bob Metzger

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

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XK Patient Becomes "Exhibit A" at University Grand Rounds
Mark Williford and Ruth Walker Contribute to Better Understanding of XK Disease
by Joy Willard-Williford

Mark Williford, XK patientXK 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.

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Patient Expresses Her Creativity
Check out Alex Irvine's Watercolours
by Joy Willard-Williford

Alexandra (Alex) Irvine smilingPatient Alex Irvine enjoys expressing her creativity.

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In this issue
TOP STORY - Medical, Science, and Patient Communities Gather in Germany
2nd Paper Published Resulting from Neuropathology of Neuroacanthocytosis Project
Ginger Irvine Honored with Service Award
Neuroacanthocytosis Syndromes at 70: A term to be Retired?
Report from 14th VPS13 Forum - July 31, 2023
Your Input Requested
Important Suggestion for XK Patients Regarding Blood Transfusions
A Patient-eye View
XK Patient Becomes "Exhibit A" at University Grand Rounds
Patient Expresses Her Creativity
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