When NA News was first launched in 2003 - a year after the charity was founded by Ginger and Glenn Irvine - the vision was simple: to create a bridge between research and reality, between scientists and families, between isolation and community. When Alex Irvine was diagnosed back in 1999, there was little to no information about neuroacanthocytosis (NA) syndromes either online or offline. Today we call them VPS13A disease and XK disease, but they’re also recognised as chorea-acanthocytosis, and McLeod syndrome.
50 editions later, that bridge initiated in 2003 has become a useful and unique resource for people affected by NA syndromes worldwide, connecting them with the knowledge, support, and hope they need to navigate their journey.
This milestone edition arrives at a meaningful moment, just before 28 February, the International Rare Disease Day, reminding us why this work matters. In a world where around 3,000 people are estimated to live with VPS13A or XK disease, every connection counts. Every research update shared, every patient story told, every practical tip offered has the power to change someone's day, their outlook, or even their care. And together, we've done this fifty times over.
What We've Achieved Together
The statistics tell our story of growth and impact:
- 100+ patients supported worldwide over more than two decades
- Over 30 research projects funded, advancing our understanding of VPS13 proteins, their mechanisms and bringing us closer to better therapies
- 2 EU funded grants, advancing the European multidisciplinary initiative on NA syndromes
- 12 International Symposia convened, bringing together researchers, clinicians, patients, and families from around the world
- 24 VPS13 Forums held since 2021, fostering global scientific collaboration and knowledge exchange
- 3 Glenn Irvine Prize awarded since 2020, recognising outstanding contributions to VPS13 research, with £5,000 awarded to support each young scientist
- 3 published books, summarising research findings and looking at possible new avenues to explore in understanding the NA mechanisms
- An average of 420 readers per editionacross Europe, North, Central and South America, Australia, Asia and Africa, proving that our small community has global reach
- Our sister organisation based in USA was created in 2019.
As some of the early editions are being digitalised into our online archives, we’ll also be able to count the patient stories and perspectives shared over 23 years, as well as the patient-oriented sessions and articles delivered during this time.
While the numbers alone don't capture what these 50 editions have truly meant, we are keen to acknowledge that behind every statistic is a person: a researcher working late in the lab, a family member searching for answers after a relative received the diagnosis, a patient finding comfort in knowing they're not alone, or a carer discovering a practical tip that makes tomorrow a little easier.
The Generosity That Makes It All Possible
None of our work happens without the remarkable generosity of our donors, supporters, and fundraisers. Over 50 editions, we've had the privilege of celebrating numerous fundraising initiatives ranging from creative, to daring, to entertaining, to challenging. Not only did they raise significant amounts of money who enables us to continue our work and support research, but they also raised the awareness about the conditions and increased the community support.
The fundraising events, to name just a few, span from marathon runs, dinners, selling hand-made cards, collecting Alex’s water paintings and limericks into a book, and Sheila’s garden open day in East Lothian (she’s already planned another one on 24/25 April 2026!), our patients and supporters have shown extraordinary creativity and dedication in championing our cause.
We've been humbled by major donors – including the Pforzheimer family and the Parry family, whose support has been unwavering since our earliest days – and moved by the generosity of individuals who give what they can, when they can.
Every contribution, whether from long-standing supported or those who’ve joined us more recently, has left its mark on these 50 editions and on the lives of everyone we serve. To each and every one of you who has given your time, your resources, and your heart to NA Advocacy: thank you! You are as much a part of this story as the science itself and we are grateful you believe in our vision and trust us to make a difference.
Voices from Our Community
We are honoured to receive feedback from the community each time we send out a new issue. Here’s a selection of messages we received in the most recent years (sorry we can’t quote them all).
#36, July 2021
“You (and Glenn) have laboured in the field a very long time. It was only when I saw on Facebook that you were 78 this past birthday that I wondered how long you planned to carry on. (I was thinking you lots younger, if that helps. 😊 ) I cannot adequately express the depth of my gratitude to you and Glenn for taking up this cause so many years ago, and for the gift of yourselves to improving treatments and finding cures. “ Joy
“Once again - informative, creative and altogether top notch.” Betty
“Several of the articles are really encouraging, eg research, speech/physio, NA-USA and more. When the research is written specially for the layman like in this issue (and often in previous ones too!), it really makes a huge difference in my opinion as to whether non-specialist readers get the gist as a result. NAN 36 also shows how effective the coordinated effort is overall, again in my opinion absolutely desirable with such a rare disease.” Louise
#38 - February 2022
“Dear Ginger, it remains true that without the tireless efforts of you and Glenn, things would not be so coordinated or advanced.” Louise
#43 – November 2023
“Dear Ginger, I am so pleased to read the articles you sent us. You and Glenn rightly deserve rewards. I hope he can see and enjoy this from where he is. Your energy and patience are recognized . You both managed to start an amazing group of people in different fields, different countries, different vocations. Enjoy this moment on your journey. I always admired both of you and your dedication on a difficult task.” Anne
#46 – November 2024
“I've just received my NA News and wanted to congratulate you on many fronts. […] Congratulations to everyone involved in the putting together of the newsletter. It has a very nice feel about it, and is so competently reported and edited, to a very good and professional standard. I know how hard it is to do this properly and you can spot the difference a mile off." Patricia
“The last issue is amazing! Particularly glad that you have the agreement with the US organization … The life stories are so well presented and I’d love to hear Alex’s poetry …” Betty
“It’s good - and not at all surprising! - to see that you’re still out-and-about and very busy pursuing your mission! And I’m sure that it continues to dig ever deeper - and bear new fruit!” Mary
"I have just read your most recent newsletter. Loved hearing about your new partnership. Alex: I enjoyed hearing/seeing your new voice lessons. Go Girl! as we say in the US … Peter Clark is an inspiration to us all.” Barbara
#48 – July 2025
“Great newsletter ... and very easy to navigate!” Carl
#49 – December 2025
“Another interesting and thought-provoking Newsletter. Thank you.” Susan
The Road to #100
As we mark this milestone, we're energised by what lies ahead. Our 2025-28 Strategic Plan is taking shape, as you’ll read in our article below. We are already working on the 13th International Symposium which will take place in Warsaw, Poland in 2027.
The Partners in Progress monthly giving program is looking to building sustainable support for our work. Research continues to unlock mysteries about lipid transport and VPS13 proteins. And most importantly, our community continues to grow more educated, stronger, more connected, and more empowered.
The next 50 editions will bring new discoveries, new faces, and new hope. We'll continue to share cutting-edge research in accessible language, celebrate community achievements, provide practical support, and advocate tirelessly for better diagnosis, care, and ultimately, treatments and cures for VPS13A and XK diseases.
None of this would be possible without you, our readers, contributors, researchers, donors, volunteers, and advocates. You are the heart of NA News, and this milestone belongs to every one of you!
Thank you for reading, for sharing, for supporting, and for believing in a future where NA syndromes are well understood, effectively treated, and no one faces them alone.
Here's to the next 50 editions, and to the progress we'll make together! 🎉
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