How You Can Help

Alexander Disease is rare. Progress depends on a community willing to advocate, fundraise, share stories, and show up — often before treatments are widely available, often without the visibility larger diseases get.

Whether you have an hour, a dollar, or a network you can reach, there's a way to plug in. Here's how.

Did You Know End AxD Day is on April 7th?

April 7 marks a moment of real hope in the Alexander Disease journey.
It’s the day a breakthrough in research showed that progress is possible.

Officially recognized in Tennessee, End AxD Day honors the families, advocates, and researchers working toward what we all believe in…a future without Alexander Disease.

Awareness leads to action. And this is only the beginning.

  • Advocacy

    Spread the word. Show up. Speak out. Some of the most valuable advocacy work happens through attending meetings and conferences, speaking openly about lived experiences, and participating in studies like the Natural History Study at CHOP — all of which give Alexander Disease the visibility it deserves.

    We're also actively growing our Board of Directors. If you feel called to help shape the future of advocacy, research, or family support at End AxD, we'd love to connect.

    Connect with Us

  • Donate

    Your contribution funds the work that wouldn't happen otherwise: research partnerships with CHOP and Ionis, family support resources, advocacy work like End AxD Day and the EL-PFDD initiative, and the day-to-day operations of a community-led nonprofit serving a rare-disease population.

    Every gift — recurring or one-time — moves the work forward.

    Donate Here

  • Shop

    Wear the cause. Our Bonfire store offers branded End AxD apparel — t-shirts, hoodies, and gear that funds our work while spreading awareness.

    Every purchase generates a donation to End AxD. Every shirt sparks a conversation. Every conversation puts Alexander Disease on someone's radar who didn't know about it before.

    Shop Merch