Asa’s Army Against Alexander Disease

12/12/2025

A step in the right direction💙💙

A meaningful milestone for the Alexander Disease community.

Ionis has received U.S. FDA Breakthrough Therapy Designation for zilganersen for AxD, an important recognition designed to accelerate the development and review of therapies with the potential to offer substantial improvement for serious or life-threatening conditions.

This designation does not mean approval, but it does mean momentum.

Read the full announcement here:
🔗 https://ir.ionis.com/news-releases/news-release-details/ionis-receives-us-fda-breakthrough-therapy-designation

End AxD will continue accelerating research, strengthening advocacy, and ensuring the AxD community remains at the heart of every advancement.

12/12/2025

💙🧬

You heard the stories -the challenges, the resilience, the urgency.

Now, we take action.

Your gift helps us continue the work that matters most:
• accelerating research
• supporting families
• advocating for real change in Alexander Disease care and treatment

If the PFDD conversations moved you, inspired you, or opened your eyes to the reality of living with AxD then it's clear that your donation today fuels the future we’re fighting for.

👉 Give today: endaxd.org/donate

Every contribution, large or small, builds the foundation for what comes next.

11/27/2025

11/25/2025

As a proud partner of End Alexander Disease ( End AxD ), the United Leukodystrophy Foundation invites our community to rally around the Alexander Disease community during their upcoming EL-PFDD meeting on December 5.

This meeting gives families and patients affected by Alexander Disease the chance to share their experiences directly with those shaping future research and treatments.
You can show your support by joining virtually. Whether you tune in for the whole session, or just part of it - your presence matters.

December 5 | EL-PFDD Virtual Event

🔗 Register here: www.endaxd.org/endaxdel-pfdd

Together, we can amplify the voices of the Alexander Disease community and drive awareness for all impacted by leukodystrophies.

11/25/2025

In this season we are extra thankful for this little guy & all the hard work he puts in daily!! 💙💙 Asa has more appts coming up in December along with some exciting things moving forward to hopefully get a treatment on the market for Alexander disease in the near future..prayers for these appts and meetings go well are much appreciated 🥰🧬

09/16/2025

Check out 🖤lesley🖤’s video.

09/08/2025

💙🧬

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💙🧬