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.
Help Spread the Awareness
End AxD Day Posters
End AxD Day is more than a moment. It’s a movement. And we need your voice in it.
Create Your Own Poster👇🏻
We’re inviting every AxD family and supporter to personalize a poster and stand with our community in raising awareness and driving support.
Instructions on how to download:
Navigate to Create Your Poster button
Select one of four templates from the Template drop-down menu
Click Photo to upload your picture
Click Download
Once you’ve created your poster:
• Post it on your social media
• Share it in your social media stories
• Email it to family and friends
• Print it for school or work
• Send it to local leaders
End AxD Virtual Community Session
If you weren't able to make it live, the recording is now available. The End AxD board covered many updates, including news on the EL-PFDD and Voice of the Patient report, Research and what’s next, Fundraising and it’s impact on where Research can go in 2026, as well as updates on community resources and family support.
Please be sure to complete the Your Voice. Our Action. Building What Comes Next Together. survey.
Together We Can End AxD
Now, you can create your own personalized awareness poster with a few simple clicks.
Share your story.
Share your strength.
Share your hope.
Whether you post it on social media, email it to friends, or print it for your community - your voice matters. When families speak together, we are heard ❤️
New Resource for the AxD Community
Ionis has launched a new disease education website about Alexander Disease designed to provide additional information for patients and caregivers. The site was developed with input from members of the AxD community, including several individuals nominated by the End AxD board.
Family Support Interview with Sarah Stoney at CHOP
End AxD is proud to bring you an exclusive two-part interview series with Sarah Stoney, MSW, LSW, a social worker in the Pediatric Multiple Sclerosis Clinic, Neuromuscular Program, and Leukodystrophy Center at Children's Hospital of Philadelphia.
These interviews help families living with Alexander Disease face every day questions - from navigating insurance and finances to managing daily care and equipment needs.
Share Your Voice
We are always grateful when Alexander Disease gets a platform and this interview is a powerful moment for awareness. Tom recently was interviewed about what Alexander Disease is, what End AxD is doing to fight it, and how everyday people can make a difference. Every conversation spreads awareness.
Top 5 Occupational Therapy Recommendations
In this short video, Stacy Cusack, MS, OTR/L, from the Leukodystrophy Clinic at Children’s Hospital of Philadelphia (CHOP), shares her Top 5 Occupational Therapy Recommendations for individuals living with Alexander Disease.
These general insights can help families and caregivers explore ways to enhance comfort, mobility, and daily routines.
We are grateful to Stacy and the CHOP team for their dedication and for sharing their expertise with the Alexander Disease community.
Our community map is being updated
We're rebuilding our community map to reflect everyone who's joined us. Check back soon. In the meantime, you can join the community.
Connecting You with Leukodystrophy Specialists
Finding the right medical team is one of the biggest challenges families face with rare diseases like the leukodystrophies. To help you connect with knowledgeable physicians and specialized care, here are trusted resources:
Stay Connected with the GLIA-CTN Advocacy Network
We encourage our Alexander Disease community to subscribe to the GLIA-CTN Advocacy Newsletter, a powerful resource connecting families, advocates, clinicians, and researchers across the broader leukodystrophy network. Visit their website at: https://theglia.org/
Get Support
Have you or a family member been diagnosed with Alexander Disease? We understand the information you have received may be new and confusing and it may be difficult to know where to go for further advice and information. This is where we can help and support you.
Please contact us and we will try to help in any way we can, for example by pointing you towards specialists in your area, connecting you with other members of the community, or sharing the latest news or lending an ear.