The Advocacy Welcomes New Trustee
Additional Trustees Still Needed
by Ginger Irvine
The 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 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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NA USA says Thank You!
by Susan Wagner
Susan 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
Rodion 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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Carers Corner
by Joy Willard-Williford
Joy Willard-Williford shares news of a support group she found with Advent Health.
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