Asa’s Army Against Alexander Disease

10/31/2026

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10/27/2026

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Meet Asa.

Asa has been the sweetest, happiest little boy from the very start. Around six months old, his family began noticing developmental delays. Soon after came seizures — and a long road of testing that ended, in an instant, with a diagnosis that changed everything: Alexander disease.

That road has held real uncertainty. But it has also revealed incredible strength and hope — gratitude for Asa's medical team, and for the chance to be part of ongoing research that gives his family hope for his future, and for other families walking the same path.

Because here's the thing about Asa: he is pure joy. He has the biggest smile that lights up every room. He loves Elmo, playing the guitar, and being outside — and you'll usually find him throwing a ball or happily munching on "Dots" pretzels, his favorite snack.

With weekly speech and physical therapy, his determination shines. He took his first steps at two and a half years old — a moment his family will never forget.

"He is joy. He is strength. He is perseverance."

Alexander disease is part of Asa's story — it does not define him.
→ Read Asa's full story: https://www.endaxd.org/community-stories/asaflippo

Your story belongs here too. To share yours, along with a photo of your loved one, email: [email protected]

09/19/2026

We are all watching sweet boy💙

09/03/2026

An answered prayer💙💙💙 FDA approval!! 🫶
Asa’s Army Against Alexander Disease

The FDA has approved Zanvastro (zilganersen) — the first approved treatment for Alexander disease.

The approval covers pediatric and adult patients, from infancy through adulthood.

You can read the FDA's announcement here:
https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-treat-alexander-disease

We are reading it carefully and will share more as soon as we have it in full.

To every family who made this possible — those in the trial, and those who gave years of scans, samples and answers long before it — and to the ones who are not here to see this day: today exists because of you.

United we are unstoppable. Together we will End AxD ❤️

More very soon.

08/18/2026

Even though Asa cannot verbally tell us he’s enjoying school just look at that face🥰🥰 I believe he’s loving it, thank you Tammy Taylor King for assisting him & sending pictures of him enjoying Pre K💙

08/14/2026

Send some prayers and good vibes up for this sweet girl Hazel facing some of the challenges of Axd💙💙
I hope her and Asa get to meet one day they are so alike in many ways🫶

Please keep the prayers coming. 🙏🏻

On Wednesday we drove straight from O’Hare to the ER because Hazel couldn’t keep anything down and we needed her to get a dose of her anti seizure meds, some zofran and a hydration pack. They were able to treat her quickly and thankfully we were back home before we knew it. She had a rough day yesterday but slowly was getting better. This morning her headache seemed to be really bad and was causing nausea and vomiting again. With the help of her amazing pediatrician and care team of neurologists + the local pharmacist advocating for her, we were able to get her Zofran prescription switched to dissolvable which seems to have helped her nausea and she’s now sleeping peacefully. We’re holding out that she’ll wake up from one of these naps and be back to our happy, healthy Hazel. 🤍

Whenever we’re going through tough times, I always think of the Mr. Rodger’s quote to look for the helpers. We’ve had so many people helping us in big and small ways. But I’ll tell you what. A simple smile + “good morning” from a stranger today as I walked into the pharmacy felt like the warmest hug and biggest morale boost. A simple smile and good morning. As a prayer, a positive thought, a good vibe request - could we all smile and say hello to a stranger today? I needed that so much today and I’m sure someone else does too.

For Hazel, let’s smile and say hello 🥰

07/26/2026

Asa loves all his friends at therapy💙💙

Happy Friday! It's never too soon to start counting down to Friday Night Lights! 🏈💙

07/09/2026

Teach your kids about mine💙
Not every disability is obvious, and not every child learns, talks, walks, or plays the same way. A little understanding can replace fear, staring, or exclusion with kindness and friendship. Teach your children that different isn’t scary—it’s beautiful.
Be kind. Be patient. Be the reason every child feels like they belong.

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