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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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The Advocacy Welcomes New Trustee
Additional Trustees Still Needed
by Ginger Irvine

Nicola KeatThe Advocacy is pleased to welcome Nicola Keat to our Board of Trustees. Her background and practical knowledge will make a positive and useful addition to our efforts to widen the scope of understanding about this rare disease as well as to add expertise with her substantial experience in a medical research environment over the next few years.

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Research Update: Animal Models and Blood Cell Research
Summaries of Recent VPS13 Forums 6 and 7; Save the Date for Forum 8
by Kevin Peikert

From Rostock, Germany, Kevin Peikert provides an update on recent VPS13 Zoom Forums. 

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Research Collaboration and Cooperation
News from Adrian Danek, Ruth Walker, and Gabriel Miltenberger
by Ruth Walker and Adrian Danek

Ruth Walker shares news of her recent trip to Munich, Germany to further research collaborations and grant submissions with Adrian Danek and other researchers and clinicians, while Adrian Danek shares recent cooperative research efforts with Gabriel Miltenberger.

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Adrian Danek to Present on NA Syndromes

Adrian Danek will present an educational webinar on NA diseases on October 25, 2022. Registration required.

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NA USA says Thank You!
by Susan Wagner

Susan WagerSusan Wagner, a McLeod syndrome-carrier and president of Neuroacanthocytosis USA, Inc., shares this heartfelt message.

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Sports News Website Features ChAc Patient Rodion Wouters

RodionRodion Wouters, from Brake, Germany, has a passion for refereeing youth football, aka soccer in the US. Recently a web-based news site did a story on how his VPS13A, what we used to call ChAc, is effecting his life as a referee. Rodion gave us permission to share the article, titled "When Health No Longer Cooperates."

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Patients Out and About

Enjoy these photos of patients Peter Clark (right) and Drew Smith out and about.

 

 

 

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Carers Corner
by Joy Willard-Williford

Joy Willard-Williford shares news of a support group she found with Advent Health.

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In this issue
TOP STORY
Save the Date - Upcoming 11th International Meeting on Neuroacanthocytosis Syndromes
The Advocacy Welcomes New Trustee
Research Update: Animal Models and Blood Cell Research
Research Collaboration and Cooperation
Adrian Danek to Present on NA Syndromes
NA USA says Thank You!
Sports News Website Features ChAc Patient Rodion Wouters
Patients Out and About
Carers Corner
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