NA News - NA News Issue 42: Glenn Irvine Prize Winner | NA Grant Leads to New Cellular Model | New Paper Published | Register for 11th Int. Meeting | VPS13 Forum | NA Patients Celebrate Life & Milestones | Meet NA's Spanish Translator

NA News Issue 42 - 21st June 2023
Neuroacanthocytosis information and research

TOP STORY - Glenn Irvine Prize Winner Announced

Thank you for reading this 42nd edition of NA News. We are pleased to announce the winner of the 2023 Glenn Irvine Prize, Dr. Kevin Peikert (shown above), and to provide details on the upcoming 11th International Meeting on Neuroacanthocytosis Syndromes to be held in Homburg/Saar, Germany in mid-September at University Hospital of Saarland University. We are also excited to share news of medical progress resulting from two recent grants, introduce The Advocacy's new charity manager, provide details of the upcoming 14th VPS13 Forum, some intriguing updates from patients, and more. Read on...

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Hot Off the Press!
New interactors and a cellular model resulted from a grant awarded by NA Advocacy
by Despina Dinca and Ricardo Escalante

Dr. Ricardo Escalante and colleagues successfully complete a three year project funded by The Advocacy regarding the molecular function of VPS13A and cellular models.

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First Paper Published Resulting from Neuropathology of Neuroacanthocytosis Project
NA-USA funded brain research makes progress with lipodomics study
by Gabriel Miltenberger-Miltényi and Joy Willard-Williford

NA researcher Gabriel Miltenberger-Miltényi and colleagues recently published their scientific findings in Movement Disorders, the official journal of the International Parkinson and Movement Disorders Society.

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Time to Register for the 11th International Meeting on Neuroacanthocytosis Syndromes
Patients and their families encouraged to attend
by Lars Kaesnter, Despina Dinca, and Ginger Irvine

Hosted by Lars Kaestner, the 11th International Meeting on Neuroacanthocytosis Syndromes will be held in Homburg, German on September 15-17, 2023. Clinicians, researchers, patients and families are encouraged to register.

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Upcoming 14th VPS13 Forum - July 31, 2023
Topic: View from the patient advocacy organizations
by Kevin Peikert

You won't want to miss the upcoming VPS13 Forum hosted by The Advocacy and by NA-USA on July 31st. Read on to learn about the upcoming forum and two prior forums.

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Anthony Monaco of Tufts University Visits the Irvines in London
Family has a long friendship with accomplished leader, scientist and teacher
by Ginger Irvine

Alex and Ginger Irvine recently welcomed Tufts University president Anthony Monaco and his wife Loia to their London home.

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Patients Celebrate Life & Milestones
Sun, Fun, and Celebration
by Joy Willard-Williford

Patients Mike Koutis and Mark Williford (Mark shown at right) shared a few photos of some of their recent activities. Mike has ChAc (VPS13A) and Mark has McLeod syndrome (XK).