Asa’s Army Against Alexander Disease

05/29/2026

As May comes to a close, we want to say thank you.

Thank you for showing up, sharing and engaging with this community.

This month reminded us that awareness isn’t just about numbers.

It’s about connection. It’s about a mom seeing another mom’s story and thinking, “I’m not the only one.” It’s about a researcher reading a family’s journey and being reminded why their work matters.

As we head into summer, we know schedules may look a little different.
Even when the day could be a challenge, try to seek out the brightness in each day, embrace the beauty in a new bloom, and enjoy capturing the small moments.

Stay connected with us here, on our website and with our monthly newsletter.
And keep the support coming - every donation matters.

We’re in this together. Always.

05/22/2026

Hope doesn’t happen by chance. It’s built through awareness, advocacy, and funding.

💛 Behind every research breakthrough is a community that refused to give up.
💛 Behind every family story is the courage to keep going when no one tells you how.
💛 Behind every gift to End AxD is someone who decided: I want to be part of the change.

Your donation fuels our research and advocacy efforts, while helping this community feel connected in their AxD journey.

Every gift moves us closer to ending Alexander Disease.

Can't give right now? Share this post - it helps more than you know.

Hope starts with you. Donate at endaxd.org/donate

05/15/2026

Communication is one of the hardest parts of Alexander Disease for many families — and new research is helping us better understand why.

A recent study, supported by the Rare Diseases Clinical Research Network through the GLIA-CTN consortium, examined language skills in 82 children with Alexander Disease.

Researchers grouped participants into three subtypes based on clinical and imaging features:
🧠 Cerebral🧠 Intermediate🧠 Bulbospinal

Using age-appropriate assessments, they measured both language abilities and functional communication across groups. The key finding: children with the cerebral subtype experienced the most significant language deficits compared to the other subtypes.

Why this matters for families:A better understanding of how AxD affects communication can lead to:
✅ More targeted speech therapy interventions
✅ Better-fitting accommodations at school and in daily life
✅ More accurate expectations and earlier support planning

In our recent community survey, nearly 1 in 4 of you identified communication challenges as one of the hardest parts of daily life with AxD. This is research that meets a real need.

Read the full research summary in the Spring 2026 GLIA-CTN Advocacy Newsletter which can be found on our website: https://www.endaxd.org/patients-and-families

05/13/2026

For many families, the path to an Alexander Disease diagnosis is long, confusing, and emotionally draining.

AxD is estimated to affect roughly 1 in 2.7 million people — imagine a jar of 2.7 million grains of sand, with only one standing out.

Because it’s so rare, many doctors have never encountered it.

Symptoms like seizures, developmental delays, and swallowing difficulties can overlap with many other conditions — leading to months or even years of misdiagnosis.

The Cancelleri family spent days in the hospital with their newborn son before genetic testing finally revealed the answer. Other families have waited far longer.

This “diagnostic odyssey” is common across rare diseases, and it’s one of the reasons End AxD is working to centralize resources and raise awareness among medical professionals.

The more people who know about Alexander Disease, the faster families can get answers.

Rare doesn’t mean alone ❤️

Learn more: https://www.endaxd.org/what-is-axd

05/10/2026

💙💙💙

I want you to know that everything you do matters.

Many of you quietly balance the grief and joy of raising a child with a disability.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough.

Your child is safe and so loved.

There may have been no progress made with toileting, feeding therapy, or communication today and that is okay.

You may have found yourself recently in a specialist’s office or a pharmacy line, wondering how on earth you landed here: waiting on a little orange bottle that you never imagined your child would rely on to tolerate this world.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”. But they know you are Mom.🖤

I want you to know that you are not alone.

When your patience has been depleted.

When you watch your child struggle to find their way in a world that wasn’t quite built to seamlessly include them.

Know that there are so many of us with you.

We feel the grief, too. We understand that it is NEVER about who your child is, but rather grief for their STRUGGLE.

We are in the race, too. The one against time {our own mortality} to support our child in building the most independent and fulfilling life possible.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

Let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears. With so many unknowns in the future, know that it’s going to get better.

I know this because we will grow stronger.

We will continue to learn, to advocate, to protect, and make certain our children know their worth and just how very much they are loved.

I am so thankful for this sisterhood of resilient mothers today and every day.

Xo, Lauren

05/04/2026

💙💙

“People do not know about Alexander Disease until it affects them.”

Meet the Cancelleri family from Leesburg, Virginia. When their son Levi was just over a month old, he began having seizures. After days of testing and a terrifying wait for genetic results, they received the diagnosis: Alexander Disease.
Doctors told them Levi would not live past age 2 — that he would never walk, speak, or read.

But Levi is now 4 years old.

His dad Tom describes him as “the happiest child” with “a magnetic personality” that his entire school loves. While AxD presents daily challenges — limited speech, difficulty keeping up with classmates, and the constant threat of seizures — the Cancelleri family refuses to give up.

They found Dr. Amy Waldman at Children’s Hospital of Philadelphia, and her expertise gave them the hope they needed. Tom shares that research into GFAP — the protein at the heart of AxD — may also unlock insights into Alzheimer’s and other neurodegenerative conditions, making awareness for our rare community even more far-reaching.

Read the full story from the Loudoun Times-Mirror: https://www.endaxd.org/news

Thank you to the Cancelleri family for sharing their journey and raising awareness.

Every family story helps others feel less alone.

04/24/2026

News our community has waited a long time to hear.

Ionis has announced that the pivotal Phase 1–3 study of zilganersen met its primary endpoint, with positive results across multiple measures in people living with Alexander Disease.

Zilganersen is now under FDA Priority Review, with a decision expected by September 22, 2026.

For a community that has lived without any approved disease-modifying treatment, this is a meaningful step forward.

Read the full news release on our website: https://www.endaxd.org/news/ionisaanpivotalstudy

04/07/2026

🧬April 7th is Alexander Disease Day🧬

Asa is fighting a battle most people have never heard of—but we will never stop advocating for him and others like him. Because of research and clinical trials, we are seeing progress that once felt impossible.

We’re fighting for awareness.
We’re fighting for treatment.
We’re fighting for a cure.

For Asa. For every child.

You can be part of that fight—donate at https://www.endaxd.org/donate 💙

02/28/2026

Happy Rare Disease Day from Asa’s Army 💙🦓
Today we celebrate the strength, courage, and resilience of every rare warrior and their families. Thank you for loving, supporting, and standing with Asa. Together we raise awareness and fight for a brighter future. 🧬💙

02/28/2026

Today is Rare Disease Day.

This week you met Nicholas, Eli, Brynn, Emory, Willany, Asa, Rober, and Caio. These are just a few of the families living with Alexander Disease.

There is real opportunity in research right now. But as our Research Lead Thomas Wagner shared, there is not enough funding to pursue all of it.

The science is ready.
Families are waiting.

Today, we are asking you to act.

Donate at www.endaxd.org/donate

Your gift accelerates research and strengthens support for families navigating Alexander Disease.

Every gift moves us closer. Together, we will End AxD ❤️

02/21/2026

Alexander Disease is an ultra rare neurological disorder.
But rare does not mean unseen.

Today we are kicking off the countdown to Rare Disease Day on February 28th by sharing stories from our community.

Over the next several days, you will meet children and families living with Alexander Disease. Their strength. Their resilience. Their reality.

The heart of End AxD is our community and the support that makes this work possible.

✔ Share this post to raise awareness
✔ Follow along and read the stories we are sharing
✔ Wear stripes on February 28. The zebra is the symbol of rare disease.
✔ Donate at www.endaxd.org/donate and help us accelerate research toward treatments and a cure while strengthening support, advocacy, and connection for families living with Alexander Disease.

Together we will end AxD.