It was supposed to be a camera check.
We had everyone get on Zoom on a Thursday night before our first ALD Family Weekend, just to make sure it worked. Then we started letting people in. Face after face. Moms, dads, kids, siblings, grandparents. We had to keep moving across the screen to see everyone.
I remember thinking we were part of something really special. All these families, in their own homes, were finally together.
Getting to that point took a while.
Finding our place in the ALD community
When we first learned about Lucas’s newborn screening result, Alison and I had so many questions we barely knew what to ask. One night, I came across a post online about a presentation at ALD Connect. I followed the link, and the next thing we knew, we were taking Lucas, Cash and the grandparents to Washington, D.C.
We walked into that first conference and wanted to sit as far in the corner as possible. We were lost. There was so much information, and we didn’t know how to take it all in. We left the first day confused and scared.
We went for a walk. We talked. And we decided to go back the next day.
That’s when Kathleen came over. Big glasses, a loud voice, and she just brought us in. She moved us toward the front of the room and made us feel like somebody understood what we were going through. Around that time, she also introduced us to Dr. Keith Van Haren.
We still left with more information than we knew what to do with. Some of it made us more scared. But now we knew people. We had a connection. That mattered.
We wanted to do something together
Over time, we started asking how we could help. Could we raise money? Put on a concert? Alison and I kept asking people because we wanted to contribute, even if we didn’t know what that would look like yet.
And when I say I, I really mean we. Alison and I have done this together from the beginning.
It also took us time to talk about ALD with people close to us. We weren’t immediately ready to share everything. So I understand that part, too. You can need people and still have a hard time telling them what’s going on.
The idea for Family Weekend grew out of those conversations and connections. We wanted a place to bring the whole family. Somewhere you could meet another parent, the kids could have fun, and siblings were part of it, too.
The Painted Turtle was already part of our family’s life. Bringing that camp experience to the ALD community felt like something we could help make happen. We started putting a team together with people from the community, ALD Connect and the camp.
Three families, then thirteen
I produce concerts and festivals. I know that feeling when you announce something and wait to see who signs up.
As I remember it, we launched Family Weekend and three families registered. Three. We knew traveling to Los Angeles would take planning and money, but we had hoped for more.
So we got back together, reached out to friends and tried again. When we got to thirteen families, we were excited. We were doing this.
Then COVID hit.
We had to figure out whether to postpone it. The idea of Camp at Home came out of those conversations. The Painted Turtle team helped families bring camp into their houses, with activities, shirts, s’mores and tents set up at home.
And then came that Thursday night on Zoom. Seeing all those faces made it real.
A place for the whole family
That is what we wanted families to have. People they could talk to. Other kids and siblings to spend time with. A chance to do something together.
It took a lot of people to make that happen. Alison, the families, the volunteers, ALD Connect, The Painted Turtle, and the people who had been building this community long before we arrived. We came into it needing help. Eventually, we found a way to help bring people together.
If you’re new to all of this, you don’t have to arrive ready to volunteer or tell your whole story. We certainly didn’t. We started in the corner of a room.
I’m glad somebody came over.
Watch my 2020 ALD Connect talk about building community. This recording reflects our experience at the time; the event announcements and research references are historical.