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Adrian Danek Presents New Insights on NA Syndromes
by Adrian Danek

Adrian Danek presented a highly instructive educational webinar on NA diseases on October 25, 2022. It is still available online.

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Forums Feature the Latest Updates on Research
Summaries of Recent VPS13 Forums 8 and 9; Save the Date for Forum 10
by Kevin Peikert, Joy Willard-Williford, and Mette Jolly

From Rostock, Germany, Kevin Peikert provides an update on recent VPS13 Zoom Forums and invites participation in Forum 10. 

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Need for Translators
Do you have translation skills?
by Joy Willard-Williford

The Advocacy is seeking translators to aid with NA News and other activities.

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Charity Manager Attends Conference
Mette Jolly attends Beacon Drug Repurposing for Rare Diseases Conference
by Mette Jolly

The Advocacy's new charity manager reports on her October attendance at the Beacon Repurposing for Rare Diseases Conference.

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The NA Advocacy USA Welcomes New Trustee
Additional Trustees Still Needed
by Joy Willard-Williford

Julie KernerNeuroacanthocytosis Advocacy USA, Inc. is pleased to welcome Julie Kerner to our Board of Directors. Julie's considerable experience and knowledge of drug development from research to commercial launch, especially in the arenas of Neurology, Hematology, and orphan diseases, position her to offer a unique contribution to the board. 

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Social Media News
New Twitter and Instagram Accounts for The Advocacy/Fundraising Made Easy
by Mette Jolly & Joy Willard-Williford

Mette Jolly, Charity Manager for The Advocacy, announces new Twitter and Instagram accounts for the organization, while NA-USA board member Joy Willard-Williford shares an easy way to raise funds via Facebook.

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Trustees Meet Patients Around the World
Travel plans include visits to patients and their families
by Candi DiMarzio and Joy Willard-Williford

Candi DiMarzio, a board member of NA-USA, files this report on her visit to ChAc patient Mike Koutis in Canada.

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Patient Shares Artwork
Alex Irvine, lover of all things cat
by Alex Irvine

Alex IrvineAlex Irvine loves cats. She is also an accomplished artist. Click on to see her lovely watercolor contribution to NA News.

 

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Rare Disease Day 2023
Plans formulating for Rare Disease Day in February
by Mette Jolly

Rare Disease Day 2023 is right around the corner. Check out plans for this special day being made by Jennifer Irvine, and be thinking how you might use this day to highlight the need for research funding for and awareness of NA diseases.

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Save the Date - Upcoming 11th International Meeting on Neuroacanthocytosis Syndromes
by Kevin Peikert and Lars Kaestner

Prof. Lars KaestnerGrab your calendars! You won't want to miss the 11th International Meeting on Neuroacanthocytosis Syndromes in Homburg, Germany, September 15-17, 2023, organized and chaired by Lars Kaestner of the Saarland University.

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In this issue
TOP STORY
Adrian Danek Presents New Insights on NA Syndromes
Forums Feature the Latest Updates on Research
Need for Translators
Charity Manager Attends Conference
The NA Advocacy USA Welcomes New Trustee
Social Media News
Trustees Meet Patients Around the World
Patient Shares Artwork
Rare Disease Day 2023
Save the Date - Upcoming 11th International Meeting on Neuroacanthocytosis Syndromes
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