Advocacy for Neuroacanthocytosis Patients An ultra rare disease

18/08/2026

NA News #51 is here 👇
http://newsletter.naadvocacy.org/tpx1xh9sgrj1ote5zegv48
This edition brings together two decades of dedication, powerful family stories, new projects, inspiring fundraising, and the latest scientific updates. We’re also launching our new series explaining emerging therapies in clear, accessible terms.

Thank you to everyone who continues to support, share, and strengthen our NA community.

25/06/2026

There’s still time to apply for our Trustee roles! 👇

We’re looking for thoughtful, collaborative people who want to make a real impact in the syndromes community. If that sounds like you, or someone you know, we’d love to hear from you! Please share to help us spread the word.

Want to join us? We are looking for three new trustees to join our Board and support our mission to raise awareness, fund research, and provide compassionate support for the people affected by ultra-rare syndromes:

• A Fundraising Trustee to help us grow and diversify our income: https://reachvolunteering.org.uk/opp/trustee-fundraising-experience-145
• Two Trustees with a personal or professional passion to bring broad insight, relevant skills and experience to shape our work and strengthen our organisation: https://reachvolunteering.org.uk/opp/trustee-professional-skills

If you’re thoughtful, collaborative, and passionate about impact, or know someone who is, please share or reach out!

02/06/2026

It’s Volunteers’ Week, the perfect moment to celebrate the people who give their time, skills, and heart to causes that matter 🙏

The Charity Commission has just published a great explainer on what trustees do and how to become one:
🔗 https://charitycommission.blog.gov.uk/2026/06/01/what-is-a-trustee-and-how-do-you-become-one/

If you’ve ever wondered whether trusteeship might be for you, this is a brilliant place to start.

At Advocacy for Neuroacanthocytosis Patients An ultra rare disease, we’re currently recruiting three new trustees to help guide our small but determined charity supporting people affected by ultra rare syndromes.

If you’re passionate about impact, collaboration, and rare disease advocacy, we’d love to hear from you. And if you know someone who might be a great fit, please share!

Volunteering can be incredibly rewarding, and there are many ways to give your time to a good cause. One of the most impactful ways to get involved is by becoming a charity trustee.

28/05/2026

Want to join us? We are looking for three new trustees to join our Board and support our mission to raise awareness, fund research, and provide compassionate support for the people affected by ultra-rare syndromes:

• A Fundraising Trustee to help us grow and diversify our income: https://reachvolunteering.org.uk/opp/trustee-fundraising-experience-145
• Two Trustees with a personal or professional passion to bring broad insight, relevant skills and experience to shape our work and strengthen our organisation: https://reachvolunteering.org.uk/opp/trustee-professional-skills

If you’re thoughtful, collaborative, and passionate about impact, or know someone who is, please share or reach out!

18/05/2026

Our 25th VPS13 Forum Report is now published!

A comprehensive snapshot of the science, stories, and community energy shaping this year’s progress in the community.

Dive in, share it, and stay connected!

https://naadvocacy.org/wp-content/uploads/2026/05/REPORT-25th-VPS13-Forum-27-Apr-2026.pdf

12/05/2026

The numbers are in! ✨£1,300 ✨

A huge thank you to Sheila M. Averbuch for opening the beautiful Garden in support of our charity this spring! Her generosity along with everyone who helped with the event, visited, donated, or took home a plant or a book, they all make a difference to our community. We deeply appreciate the meaningful contribution!

This amount will go towards the grant awarded to Dr Kevin Peikert at University Medical Center in Rostock, Germany. His lab is the only one in the world to perform the Western blot test. The test can be conducted and interpreted only under scientific conditions. It provides support to the clinicians and researching colleagues looking to understand if they are to diagnose either of the syndromes, VPS13A disease or XK disease. This amount will cover the materials for over a dozen tests, currently provided free by the lab in Rostock, continuing the work of its dedicated predecessors.

Also keep an eye out for Ginger’s full story about the two days spent in the magnificent garden!

11/05/2026

Got 60 seconds to do a good deed?
Please nominate us to receive £5,000!
The link 👇will take you to pre-filled form for our charity. Thank you 🙏

https://movementforgood.com/draws/special/health-wellbeing?cn=1133182&ct=health&i=1778501233-72770.jpg&utm_source=holiday+card&utm_medium=social&utm_campaign=M4G2025card&utm_id=M4G2025card

26/04/2026

Here’s a glimpse into what Sheila’s splendid garden had to offer to the visitors on 24 and 25 April 2026!

Our huge thanks to Sheila M. Averbuch for her continued 🙏 The funds raised will be donated to our community. Your visit to will brighten your day, and it also helps brighten the lives of families affected by the ultra rare syndromes.

See https://scotlandsgardens.org/mercat-cottage-garden/

25/04/2026

Ginger Irvine reports on day 1 @ Sheila M. Averbuch's Open Garden under Scotland's Gardens Scheme