Mike Deeley

Mike Deeley, a veteran and former network system engineer, has become a fierce advocate for ALS awareness.

The last two years have been something of a whirlwind for Mike Deeley.

In December 2016, the West Hempfield Township resident and veteran was working as a computer network engineer and still active in his local rugby league at the age of 46.

But then he got the diagnosis that would change his life — one that would spur him into action for a disease that he never knew he was twice as likely to get as a military veteran.

Deeley, who has amyotrophic lateral sclerosis, or ALS, got involved in advocacy almost right away. He got the care he needed through the Veterans Administration, but others, he knew, were far less lucky.

Taking a leadership role, he put together fundraisers and went on organized trips to Washington, D.C., and Harrisburg to lobby for things like increased funding for ALS research through the Department of Defense.

He was recently named the volunteer of the month for the ALS Association Greater Philadelphia Chapter, which called him “one of the most effective advocates in the country.”

“It turned out I have a lot of support through the VA and my status being a veteran, but there’s other people that it doesn’t go away,” he says. “It becomes a fact of life.”

Family: Wife, Tima; daughter, Nicole, 27; and stepson, Eric, 13.

Hometown: Lititz.

Where I live now: West Hempfield Township.

Age: 49.

Growing up, I wanted to be: Successful.

Where I like to spend time in Lancaster County: The Lititz area in general.

Best role model: My dad.

Hobbies: Rugby was a primary thing in my life. Throughout my life I competed in weight lifting for a number of years through my 20s. I always enjoyed cars, motorcycles, and the outdoors, fishing and hunting.

Favorite vacation spot: I’ve been digging Jamaica lately, and we’re looking at going back there.

Person I’d like to meet: I’d like to sit down and have a beer with Paul McCartney.

Something people might be surprised to know about me: I raised my daughter since she was 5, pretty much by myself.

What people should know about ALS: There are only around 30,000 people in the United States that have it, but the problem with ALS is it’s a revolving door with a two- to five-year lifespan … the numbers always stay low. People look at it as a rare disease, and it is, but I don’t think they realize how many people are affected by this disease.