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NA Advocacy USA Awards $100,000 Grant for Brain Research
Researchers at the Icahn School of Medicine at Mount Sinai to Focus on XK Disease (McLeod syndrome)
by Joy Willard-Williford and Ruth Walker

NA Advocacy USA LogoNA Advocacy USA, Inc. recently finalized a third grant to the Icahn School of Medicine at Mount Sinai in New York City for the purpose of continuing the very successful “Neuropathology of Neuroacanthocytosis Syndromes Project.” The focus of the research will be on tissue of XK patients.

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Save the Date! The 18th VPS13 Forum to be Held on July 29th
Topic: Nutritional challenges among people with feeding dystonia and Medical Q&A
by Adrian Danek, Kevin Peikert, & Ruth Walker, VPS13 Forum Organizing Team

VPS13 Forum logo You won't want to miss this important forum on a common challenge to both our VPS13A and XK patients - nutrition. If time permits, there will be a medical Q & A session. Read on for details...

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Reporting on 17th VPS13 Forum, 29 April 2024
Read about the interesting presentations given at the most recent Forum which took place on 29 April 2024
by Despina Dinca

17th VPS13 Forum which took place on 29 April 2024 online - topic: Between Huntington's and Parkinson's? The topic was focused on examining the links between Huntington's and Parkinson's diseases and neuroacanthocytosis syndromes (XK and VPS13A diseases).

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Voice Workouts
Maintaining and improving oral communication is an important therapy for patients diagnosed with VPS13A or XK disease.
by Alex Irvine and Elina Tripoliti

Dr Elina Tripoliti, Speech therapist Dr. Elina Tripoliti, speech therapist from University College London, and Alex Irvine, VPS13A patient, share the daily voice workout they’ve been using. It doesn’t need to be something complicated, but it’s important to do it every day.

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Wellbeing Hub, a useful collection of resources
On the hunt for resources? Check out Wellbeing Hub
by Despina Dinca

Wellbeing Hub cover photoLiving with a rare disease can be psychologically and emotionally demanding. The challenges can be diverse and often complex, too. So, it’s important for everyone affected by a rare disease to look after themselves and to know where to find the right resources to help and support them.

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Toe-tapping XK Patient
by Bob Metzger

Bob Metzger, NA USA Advocacy TrusteeThe ever-talented Bob Metzger shares his experience with tap dancing, and how it brings him joy while also engaging his brain.

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Genetic Testing
The Advocacy's charity manager, Despina Dina, reports on a series of webinars she and Ginger Irvine attended on genetic testing
by Despina Dinca

A lab vial labelled DNA testGenetic testing – how easy or complicated can it make things for someone looking to obtain an accurate diagnosis for themselves or someone related to them? We attended a series of webinars called Decoding Diagnostics that offered a lot of useful information about genetic testing. This is a summary of what we learned, and we will publish more details on our new websites coming later this year.

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5k Running Challenge to Raise Funds for our Charities
For Charity Manager Despina Dinca, the 5k running was a personal challenge and also raised funds
by Ginger Irvine

Parallel Windsor Festival - map drawing with areas of interestAn inclusive festival dedicated to living with no limits was the perfect opportunity to take up a challenge and try a different kind of fundraising!

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Rare Disease Day 2024 Update
by Despina Dinca

I support Rare Disease Day, 29 February 2024, #rarediseaseday, rarediseaseday.org (graphics provided by the organisations to raise awareness around and on the Rare Disease Day)Rare Disease Day (RDD) is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Read on to learn more about how Rare Disease Day 2024 was celebrated by the NA community.

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In this issue
TOP STORY - Inspiring Story of Eric Koning
NA Advocacy USA Awards $100,000 Grant for Brain Research
Save the Date! The 18th VPS13 Forum to be Held on July 29th
Reporting on 17th VPS13 Forum, 29 April 2024
Voice Workouts
Wellbeing Hub, a useful collection of resources
Toe-tapping XK Patient
Genetic Testing
5k Running Challenge to Raise Funds for our Charities
Rare Disease Day 2024 Update
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