Ken is a wonderful ambassador for the ALD Community and an amazing resource for other patients who face the adult onset form called Adrenomyeloneuropathy or AMN.

“Hi! My name is Ken and I was diagnosed with AMN when I was 31 years old. Having a brother and uncle both diagnosed with the gene defect, I was vaguely familiar with it. I knew it could be deadly as I had lost that uncle at age 37. I was scared I was going to follow down those same footsteps. The information on the internet was less than helpful, which led me with feelings of confusion and being lost. It wasn’t until I went to see an ALD specialist which opened my eyes and to keep my “head out of the sand”. I then found the community, which is a strong and mighty community across social media. I realized I’m not alone in this battle and it changed my total outlook on life. I took the stance of keep on going and enjoy what I have in my life while I can, as the future definitely isn’t guaranteed. “Keep those feet moving” is my slogan as keeping moving physically is a great aid to hold onto your independence for as long as you can. You will find my say that slogan on my YouTube channel where I occasionally give updates on my life and AMN in general. I’ve met and helped so many people from that platform and it’s gratifying helping those who are also lost and confused. Helping have the same realization that I did, is awesome!”

To learn more, please visit Ken’s amazing YouTube channel: