More News
Deadline Nears on Nominations for the Glenn Irvine Prize
Deadline: March 31, 2023
by Adrian Danek, Hans Jung & Ruth Walker

The Advocacy for Neuroacanthocytosis Patients recently announced it is seeking nominations for the Glenn Irvine Prize, named in honor of the co-founder of The Advocacy.

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First Winner of Glenn Irvine Prize Shares Insights
Jae-Sook Park in Her Own Words
by Jae-Sook Park

Jae-Sook Park, a research scientist at Stony Brook University in upstate New York, was the winner of the first Glenn Irvine Prize in 2019. Recently she took some time to reveal how the prize has impacted her research.

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Acanthocytes Identified in Huntington’s Disease?
Misshapen Red Blood Cells Lead to Confusion
by Kevin Peikert, Andreas Hermann, Ruth H. Walker, Lars Kaestner, Adrian Danek

AcanthocytesNA researchers cast doubt on recent discovery of acanthocytes in Huntington disease patients.

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Upcoming 12th VPS13 Forum - March 27, 2023
Topic: Muscle and Nerve
by Kevin Peikert

You won't want to miss the upcoming VPS13 Forum on "Muscle and Nerve" on March 27th. Read on to learn about the upcoming forum and two prior forums.

 

Check out our new VPS13 Forum logo to the right, courtesy of Kevin Peikert.

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NA-USA Partners with RARE-X
by Bob Metzger

Bob Metzger, NA-USA board member and McLeod syndrome patient, files this report on the brand new partnership between NA-USA and Rare-X.

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Neuropathology of Neuroacanthocytosis Project Update
by Ruth Walker

Neuroacanthocytosis Advocacy USA is pleased to share a brief update on recent progress on the Neuropathology of Neuroacanthocytosis project.

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Super Fundraiser on Super Bowl Sunday
Patient Drew Smith raises over $3000 for research on Super Bowl Sunday
by Joy Willard-Williford

Drew Smith recently combined his love of sports with his talent for fundraising and his heart for his fellow ChAc patients around the world.

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The NA Advocacy USA Welcomes a Second New Trustee
Additional Trustees Still Needed
by Ricky Ditzel

Neuroacanthocytosis Advocacy USA, Inc. is pleased to welcome Ricky Ditzel to its Board of Directors. Read on to learn more about him in his own words.

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Patient Encourages Others to Live Life to its Fullest
Mike Koutis With an Important Word
by Mike Koutis

Mike Koutis, shown here with fans Candi DiMarzio and Kristy Mohr, loves life. While life with ChAc is a constant struggle, with a desire to inspire others he recently posted this post on Facebook and agreed to allow us to share it here.

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

The Advocacy continues to seek translators to aid with NA News and other activities.

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In this issue
TOP STORY
Deadline Nears on Nominations for the Glenn Irvine Prize
First Winner of Glenn Irvine Prize Shares Insights
Acanthocytes Identified in Huntington’s Disease?
Upcoming 12th VPS13 Forum - March 27, 2023
NA-USA Partners with RARE-X
Neuropathology of Neuroacanthocytosis Project Update
Super Fundraiser on Super Bowl Sunday
The NA Advocacy USA Welcomes a Second New Trustee
Patient Encourages Others to Live Life to its Fullest
Need for Translators
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