We Are Not Alone

BY DAVE LUKAS
CRYSTAL LAKE, ILLINOIS

The inaugural Chicagoland Walk & Roll to Cure FSHD exceeded every expectation and goal I had. What an amazing day filled with family, community, music, great food, fun, and picture-perfect weather!

We had 230 walkers (my goal was 150).

We raised $43,301 (my goal was $25,000).

But more than anything else, I wanted our Walk & Roll to Cure FSHD to be about family and community. That Saturday I realized that goal when I looked out and saw parents talking and sharing while watching their children play lawn games. I saw picnic tables crowded with people sharing food, stories, and laughter. People didn’t simply walk and leave. They stuck around to spend time together. And I started to cry (for the 100th time) because this is what it’s all about. It’s about connecting, and about family and community.

FSHD brings up a lot of feelings of loneliness. Feelings that no one understands what it’s like to have FSHD. There were 16 people with FSHD at the walk, and I took a moment to take a picture with just us. In that moment, for me, I didn’t feel alone. I looked around and saw 15 people just like me. Yes, we’re each affected differently by it, but we get it.

Then I told our FSHDers to look out at the other 220-plus people looking at us. All those people came out for us. They came because they love us and support us. We are not alone. Not only do we have each other, but we have a small army of people who will show up when we need them. You can’t put a price tag on the feeling of being seen.

The other moments that stood out for me were watching people with FSHD finish the walk. Some were in wheelchairs and got up to walk the last stretch to the finish line. Some crossed the finish line in their wheelchairs, with family and friends surrounding them. Some completed the entire walk on their own. We embodied the words on the buttons we wore that day which read, “I have FSHD, but it doesn’t have me.”

The Walk & Roll to Cure FSHD showcased all the character traits I’ve come to know and love about all of those affected with FSHD: determination, heart, character, gratitude, love, laughter, positivity, and family.

What’s even crazier to think about is that this is just the beginning. We only go up from here. But the foundation we built is a solid one, and I’m excited to see how it grows.