ALS entered my life on February 20, 1996. It was Fat Tuesday. While the revelers reveled in New Orleans, my wife Shelbie and I had a safe fall from the sky and land on our heads. My 28-year-old beloved had ALS. That was day one of our twenty-year journey. When we were told she had two to five years to live, we planned on going out in a blaze of glory - but she kept hanging around. By the grace of G-d, Shelbie had a slow-progressing form of ALS.

There were unimaginable highlights - standing with President Clinton when he signed the FDA Modernization Act, being welcomed into the Phillies family and featured on prime-time television. It just seemed impossible that this beautiful young woman could have ALS. I know it seemed impossible to me. Shelbie was a true one of a kind. She was magnetic around children - grown-ups too. She could screw you over in Monopoly and you would somehow love her for doing it. She was the girl in high school who could hang with the Dungeons and Dragons crowd. I have seen it so many times when a person gets “Shelbied.” It’s a moment of pause, to step back for a minute and take her in. Shelbie was so cute and so smart (no matter how many times I tried to convince her she was stupid). But the one thing I miss the most is her humor - hands down, the funniest person I ever met, and she could do physical comedy too! ALS is so frustrating. She told me the most frustrating thing for her was when she had a joke all lined up but couldn’t say it. She said she felt like Jack Nicholson in the hallway scene of The Shining, flailing away uselessly at air.

Through all the trauma and travails, Shelbie maintained her light. For nearly 20 years, we refused to lose. It is a hard life for anyone but the most spiritually ascended. Personally, I think even those people with ALS living at a higher state of consciousness, who embrace life as it is, on a low day can still be heard saying, “This sucks.” No matter what and we always had Mary Tyler Moore on our side. We would raise our hands together when we heard, “You’re going to make it after all.” I assumed more of the lift as time went on. Then I assumed it all. It’s cruel, cruel stuff, as physical functions slip away while the mind is fully intact.

After Shelbie passed away, I was sure I wanted to move on from ALS. But then I was asked to join the Board for the local ALS organization. I know how much families appreciated the support because our family was blessed by their care. As much as I loved being a part of changing lives, I was frustrated by the overall trajectory. My question became: What can I do to have the biggest impact in the shortest amount of time? als.COMMUNITY is my answer.

I reached out to my friend Matt Bellina, another incredible human being whose life was redirected by ALS, along with his young family. I walked him through the slides. When I was done, he said through the chat, “There is too much cognitive ability being wasted in the ALS community.” An organization was born. Our hope is we have created a special place to go, a true community, for people with ALS, those who love them, and those who support them.