Asa’s Army Against Alexander Disease

11/01/2025

09/16/2025

Check out 🖤lesley🖤’s video.

09/08/2025

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09/08/2025

09/02/2025

It’s a rare and devastating leukodystrophy that affects the brain and spinal cord. Caused by a mutation in the GFAP gene, it leads to the buildup of toxic proteins that damage myelin — the protective coating around nerves.

There is currently no approved treatment. But there is hope.

Through research, advocacy, and the strength of our community, we believe the future of Alexander Disease can change.

👉 This September, during Leukodystrophy Awareness Month, follow along with End AxD as we spotlight more about Alexander Disease, share the voices of our community, and highlight the work being done to bring answers and hope.

🔗 Learn more: www.endaxd.org

09/01/2025

The month of September we raise awareness for Leukodystrophy because what the heck is that!? Even as a nurse I had never heard of any leukodystrophy in general much less Alexander disease specifically. Definitely didn’t have a clue what it means for my child to be diagnosed, the need for research, need for treatments & need for a CURE until grasping at straws trying to find these things for my baby. It’s hard, it’s exhausting & overwhelming-but Asa is here-FIGHTING this disease and I thank God for that everyday! We have our challenges of course and the harsh reality is that his future is uncertain but we will never give up!! If you know Asa you know he’s something special (of course I’m gonna say that I’m his mom)💙💙

So anyways, it’s been awhile since we did an Asa’s Army t shirt order & bracelets but if you have one of those or wear the color blue this month 1. I hope you think of Asa & say a little prayer for him & 2. it would be cool if you share a pic under this post when you do💙🧬

08/11/2025

Hello followers! Asa has had a fun filled summer! Just a little update💙💙
He had a little hiccup a few months ago with his intracranial pressures being consistently elevated but that was improved at our July appointments 🙌 July also made 1 year seizure free 🎉 He had some labs done last week checking on a few levels and those were good too💙 He loves playing his guitar, watching “sing” & the wiggles, following his sister around and playing with the kids and therapists every week at therapy! He is obsessed with Mcdonalds chicken nuggets and Dots pretzels right now, we are so glad his appetite has improved the last few months too!! We are so blessed that he’s been doing well and always appreciate people checking up on him!

07/29/2025

Finding help with a rare disease like Alexander Disease can feel overwhelming — but End AxD is here to make it easier.

🧭 From clinical trials to caregiver support, research updates to practical tools - our Resource Hub brings it all together in one place.

👥 Whether you're looking for medical guidance, family connections, or everyday tips to navigate life with AxD, we've gathered the most trusted resources to support your journey.

🧬 Start exploring today: https://www.endaxd.org/resources
Because knowledge is power and you are not alone.

07/27/2025

We’ve launched a new research grant program to fuel AxD science with support from our Scientific Advisory Committee.

🧬 We’re inviting proposals from scientists worldwide.

💰 Thanks to YOU, we can accelerate toward treatments and a cure.

Help us spread the word!

Find out more about the End AxD Grant Program here: https://www.endaxd.org/grant-program