What is AxD?

Alexander Disease is a rare, progressive and typically fatal Central Nervous System Disorder. It is one of a group of disorders, called leukodystrophies, that involve the destruction of myelin, a protective sheath that covers nerve fibers. Alexander Disease is caused by mutations in GFAP protein, and is characterized by abnormal protein deposits known as Rosenthal fibers. Patients may experience developmental delays of both cognitive and motor skills, eventually experiencing milestone regression as white matter deterioration progresses.

How rare is AxD?

Alexander Disease is "Ultra-Rare." The exact prevalence of Alexander disease is unknown. About 500 cases have been reported since the disorder was first described in 1949. This is one of the reasons building a patient database is so critical.

What is End AxD’s mission?

To be a catalyst for research and development of a treatment, and eventual cure, of Alexander Disease, and to help those with this disease and other types of Leukodystrophy get the care they need.

How do I support End AxD?

There are many ways that you can help support End AxD.

Sign up for the Patient Registry: Alexander Disease is Ultra Rare. Researchers need to build a full picture of what disease progression and pathology looks like if they are going to create effective treatments.

Advocacy: Spread the word about End AxD among your family, friends and community. Just think about what the Ice Bucket Challenge did for ALS!

Donate: Your donation will go towards life-saving research and to help support those affected by AxD.