Meet AxD Patients and
Join The Contact Registry!
Science is progressing rapidly not only for leukodystophies, but especially for Alexander Disease. For the first time, a potential therapy is in clinical trials, and others are in pre-clinical development.
Having a comprehensive registry of patients not only creates a larger pool of participants for potential clinical trials, which makes Alexander Disease more “attractive” to pharmaceutical companies, but also gives researchers a more accurate picture of AxD.
That means we can potentially identify patients earlier, gain a greater understanding of disease progression, and achieve better patient outcomes. You can make a difference by registering yourself, or a loved one in the registry.
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.
Get To Know Where Your End AxD Community is Located
Did You Know? Our Alexander Disease community is growing across the world, and we’re mapping it!
The End AxD Map is more than dots on a screen. It’s families, patients, caregivers, and advocates who are saying: “We are here. We are united.”
To be part of this map, families must register with End AxD. Every registration strengthens our collective voice, fuels research, and ensures families have access to vital resources and updates.
To view this map, your device must be able to access location services.
If Google Maps access is turned off or restricted (often with work/school accounts), the map may show an error. Try switching to a personal account, using an incognito window, or enabling Google Maps access.
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.