Neuroacanthocytosis Advocacy USA, Inc.

02/28/2026

Great to see our sister organization featured. Always grateful to them for including our logo. ❤️

02/28/2026

02/26/2026

Extra! Extra! Read all about it! 50th Anniversary Edition of the NA News!

50 Editions Strong | $73,000 Raised | New Research Puerto Rico | 12 Symposium Proceedings | 24 VPS13 Forum | Research Advisory Committee | XK Blood Donation | Patient Fundraiser | Strategic Plan | Partners in Progress | Seeds of Support | New Trustees

02/18/2026

⏰ The countdown is on: just 10 days until Rare Disease Day!

There’s still time to get involved! Join a local event, share your story online, or light up your home/office to show your support for the rare disease community!

🌍 This global day is about awareness, solidarity, and action. Every post shared, every event attended, and every light that shines helps make the rare visible and reminds us that we are stronger together.

Learn more about how to participate, find events near you, or access campaign materials: https://go.rarediseaseday.org/RDD

Let’s make this year’s Rare Disease Day more than you can imagine. 💪

02/16/2026

We’re proud to share new research presented by Cristal Alicea Malavé at the 6th Pan American Parkinson’s Disease and Movement Disorders Congress in Houston, 13-15 February 2026.

See Cristal (left) and Professor Ruth Walker (right) next to the poster which was registered as a late-breaking abstract. The team explored why VPS13A disease (chorea acanthocytosis) appears more common in Puerto Rico than expected for such a rare condition.

They identified 17 patients from 14 families and found that three specific genetic variants keep recurring in Puerto Rican families. As the abstract notes, “The 3 recurrent variants can be considered as ‘founder mutations’ and have likely been present in the population for many years.”

This work helps families reach a diagnosis sooner and strengthens awareness of VPS13A disease across the Americas.

Please share to help raise awareness.

Read all the late-breaking abstracts here:https://www.pascongress.org/PAS26-LBAs.pdf

01/31/2026

Interesting piece on how the US healthcare system lags behind many other countries, especially concerning timely diagnosis of rare diseases. Many if not most of us have personal experience with this exact problem.

Explore the challenges faced in US healthcare for patients with rare conditions and how global models can enhance care.

01/20/2026

From Drew Smith:

WIth a couple weeks to go,
I have one board already full
Here is a simple reminder
To join in my NA Super Bowl FUndraiser!

THANK YOU,

DREW

Dear Family and Friends,

Over the past 3 years, I have sold 500 squares and donated over $8K
All towards research funding for N.A. !
Please help me reach $10K, my ultimate goal,
By raising $2500 to hit $10K in total.

With the Super Bowl only a few weeks away,
Please consider buying a square to support NA!
Unlike, last year when I was scrambling and at a low,
I have all my ducks in a row and now I’m ready to go!

The format is the same as before
100 squares to fill a board and gladly will do more!
$25 per square is the fee,
Or a donation would mean alot to me!

50% of the proceeds goes to N.A.,
And 50% goes to those that play!
$1250 is up for grabs for you to win,
Let me know if you want in!

Please email dgsmith787@gmail.com directly to me,
With your name, the number of squares you want, and your Venmo fee!.
Direct messages are okay,
While email is the preferred way!

My contact information is the red bolded font below,
The deadline is the Wednesday before the big show!
Below is the PAYOUT breakdown,
It's on, now until the FINAL touchdown!

50-50
$1250
NA USA

$1250
$50 for the first score
$150 end of the 1st
$300 for the HALF
$150 end of the 3rd
@$600 FINAL SCORE
—————————

VENMO ME AT - DREW SMITH
-

EMAIL ME AT - DREW SMITH
dgsmith787@gmail.com

DIRECT MESSAGE ME -
ON INSTAGRAM


ON FACEBOOK
Drew Smith56

01/09/2026

We are pleased to announce that the proceedings of the 12th International Meeting on Neuroacanthocytosis, Cohen Syndrome and other VPS13-Related Disorders has been published in the Journal of Tremor and Other Hyperkinetic Movements. The link below doesn't seem to work, but you can easily find it at tremorjournal.org Check it out.

V***a F, Yalcin B, Kaestner L, Danek A, Peikert K, Walker RH, Ansar M. Proceedings of the 12th International Meeting on Neuroacanthocytosis, Cohen Syndrome, and Other VPS13- Related Disorders. Tremor and Other Hyperkinetic Movements. 2026; 16(1): 3, pp. 1–23. DOI:

Taxonomy:ChoreaProceedings of the 12th International Meeting on Neuroacanthocytosis, Cohen Syndrome, and Other VPS13-Related DisordersConference ProceedingsAuthorsFabrizio V***aBinnaz YalcinLars KaestnerAdrian DanekKevin PeikertRuth H. WalkerMuhammad AnsarAbstractThe 12th International Meeting on Ne...

01/01/2026

💜Living with a rare disease can impact every corner of a person’s life, often leading to a deep impact emotional wellbeing.

From long diagnostic journeys to feelings of isolation, anxiety, or uncertainty, mental health challenges are part of many people’s experiences within the rare disease community.

This January, we’re shining a light on the impact of rare diseases on mental health, recognising the importance of open conversations, community support, and access to appropriate care.

Learn more about mental health and wellbeing here:https://go.eurordis.org/mentalhealth

Reach out to someone you know needs to talk, this January!

12/31/2025

Wishing for you all a Happy New Year!!

May 2026 be a year when scientific discoveries lead to better treatments and an ultimate cure for VPS13A and XK diseases.

09/24/2025

Always appreciative of Despina, charity manager for The Advocacy for Neuroacanthocytosis Patients, for her behind-the-scenes work making the forum information available and understandable to us lay folk. Here is her summary report of the 22nd VPS13 Forum Report. Her post below includes dates for upcoming VPS13 forums.

🧬 Just published 👉 The 22nd VPS13 Forum Report

At the end of July, over 60 participants joined us to hear the latest on VPS13 and XK proteins - from cutting-edge structural biology to new discoveries about brain repair, cell stress, and mitochondrial health.

We also shared updates on our new three-year Strategic Plan which will be published soon on our website.

It took us a while to publish this report because we’ve been very busy bees with the 12th Symposium which took place in Lausanne in mid-September. So more reporting coming your way soon!

In the meantime, next Forum dates for your diary:
• 24 November 2025
• 26 January 2026
• 27 April 2026
• 27 July 2026
• 26 October 2026.

The VPS13 Forum brings patients, families, clinicians, and researchers closer, all in the spirit of searching for clues to a cure.

📖 Read the full report here:https://naadvocacy.org/wp-content/uploads/2025/09/REPORT-22nd-VPS13-Forum-28Jul2025.pdf

📖 Browse the archive: https://naadvocacy.org/research-forum