Mark Drakeley

What is your role/focus on the End AxD board? 

To support the board, the members of this community, and serve as an advocate for this community. I hope to represent in front of bodies that will provide funding for research.

Why did you want to serve? 

As a parent with a child (Aiden) afflicted with the disease, I want to do everything I can in search of treatments and a cure for AxD. AxD is such a rare disease I felt compelled to serve as we battle this daily as a family.

What do you want to accomplish?

Like every parent and family member touched by the disease I want to push forward the “cause for a cure”.

As a community, we all share a common bond as we push the “cause for a cure” for our loved ones. None of us is ever alone in this fight. We all know the physical, emotional, and psychological toll AxD extracts on those afflicted and their family. I hope that my contribution of time and energy moves us all forward.