Dear Haven Family,

I am incredibly honored Haven chose Amyotrophic Lateral Sclerosis (aka ALS or Lou Gehrig’s Disease) as this month’s subject for their “Illuminate a Cause” initiative. ALS is a disease where the body loses its neurological connections with the brain. This incurable, progressive condition causes the person to slowly lose access to their ability to walk, eat, talk and, eventually, breathe on their own. ALS Awareness Month is celebrated each May to raise public awareness about ALS, show support for those affected by it, and give recognition to those working to find a cure. Many people also got to know more about this disease through the 2014 ALS “Ice Bucket Challenge” which raised crucial dollars for research and patient support.

[Photo: Brian Mitchell (L) and Chris McCoy (R), Founder of Haven]

My Story
Friday, September 9th, 2022 was the day I was diagnosed with Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig's Disease, Motor Neuron Disease). My life was turned upside down when I was told I had 2-3 years to live. With the sudden realization that my oldest child was only a Freshman in high school, I lost my composure when it sunk in I may not get to see any of my 3 kids graduate high school or walk my daughter down the aisle.

Shortly after my ALS diagnosis, we had to push the "mute" button on my journey because my wife, Amy, was diagnosed with breast cancer in November 2022. Her journey has been difficult ... significant surgery, 7 months of aggressive chemotherapy and finally a long series of radiation treatments. She completed her treatment journey in early 2024 and is now in remission. She has started her long term drug regimen and is doing well managing the side effects. We were able to take several family vacations in 2024 and we made many great memories together!

So for the first 13 months of my ALS diagnosis we focused on Amy … my diagnosis was a tightly held secret. That changed on October 28th, 2023, which was the day my wife and finally broke the news of my ALS diagnosis to our 3 kids, Tanner, Kallista and Kellan. Nothing could have prepared me for that discussion, and I pray none of you reading my story ever have to go through it. I am so proud of my kids for the way they have handled my diagnosis, for the way they have shared their feelings/questions, and finally, for being at my side fighting together!

PS: Many people like to show support during ALS Awareness Month by wearing a colored ribbon. Those who associate ALS with with Lou Gehrig where a striped blue ribbon (a nod to the New York Yankees baseball team), however, the official color stated by the ALS Association is red. I intend to use my Haven Lighting to illuminate my home Blue and Red and I would be honored for you to do the same.