Hi, my name is Max, I am 2 years old, and I have Alexander Disease (AxD). This is a very rare, usually fatal, neurological disorder that can cause a range of motor and cognitive difficulties including seizures; difficulty swallowing, eating, and vomiting; and severely impaired balance and coordination.

When I was 7 months old, I had my first seizure, and after a lot of time in various hospitals, my mom and dad found out my diagnosis. The doctors told my parents that I might only live for 5 years and that there is not much they can do for me. But my parents are not giving up.

There is currently no cure for what I have, but for the first time there is real hope, thanks to new approaches to Gene Therapy and drugs that have proven effective in neurodegenerative diseases like ALS or MS.

Fortunately, there are World Class scientists committed to helping children like me, but they don't have enough funding to conduct the experiments necessary.

This is why my mom and dad are raising funds to support organizations and research