I have lived with CMT my entire life — and for most of it, I did it alone. Nobody knew what it was. Not my community. Not even my doctors. I spent years explaining my own disease to the medical professionals who were supposed to help me.

​

So I made a documentary about it. "Alice" — released in 2013 with support from HNF — put CMT on screen for the world to see. If I could reach one person who felt as lost as I did, it was worth every hard day of filming.

​

That film changed things. And I wasn't done. For nearly three years, I've been on staff at HNF, fighting every day to raise awareness and fund the research that will end this disease. CMT advocacy isn't just my job. It's who I am.

​

In the water, CMT goes quiet. The pool is the one place my body just moves — free, weightless, unafraid.

That's what I'm swimming toward for every CMT patient who comes after me.

​

Back my Rat. Help us find the cure.

— Alice, my 2 dogs, and my 🐀