On Sunday, September 7th, at Zervas Elementary School in Newton, MA, the ALS community will gather to participate in the 2025 ALS Walk for Research. The event, a scenic three-mile walk, roll, or stroll, benefits an incredible cause—the critical research to discover treatment and cures for ALS at the ALS Therapy Development Institute (ALS TDI).

In anticipation of this year’s walk, we’re interviewing the leaders of some of the event’s biggest and most successful teams. Today, we’re joined by Julie Gann of the team Joyce’s Jaywalkers.

ALS TDI: First off, can you introduce yourself and your connection to ALS?

Julie Gann: I’m Julie Gann, and my mother’s name was Joyce Edelstein. She passed away in 2011. She was 51 when she was first diagnosed, and all her abilities and quality of life deteriorated very quickly. Within about a year and a half, she was on a feeding tube and a ventilator, unable to move. By that time, she couldn't speak anymore. Within a few years of that, she couldn't even communicate with her eyes. She passed at 61 years old in 2011 after ten years battling ALS.

How did you get involved in the ALS Walk for Research?

When my mom was still alive, in the early years after her diagnosis, my brother worked as the Director of Events and Public Relations for the Massachusetts chapter of the ALS Association. He helped plan their Walk to Defeat ALS, and that’s where the team name, Joyce’s Jaywalkers, came from. But we only did that for a few years, and then we stopped.

Then, I saw that ALS TDI was going to do a walk in Newton, where I live. I said, “This is something that I want to participate in.” That first year, it was just me and my friend Jill from childhood, who knew my mom well. Then, the following year, most of my closest friends joined in, so there were about five or six of us, and we brought back the team name Joyce’s Jaywalkers. About a week before I signed up for that second walk, my sister passed away—not of ALS, she had another neurological disease, CIDP. But we decided that we were going to do the walk anyway. 

Why was it important to you to still do this event even with all you were facing at the time?

This is one of the only things that I do right now that connects me to my mom. I think it’s really important, after someone's passed from a disease, that you don't stop supporting the cause to find a cure, because of all the people that come after, who are sick right now and will be sick.

The end goal is obviously a cure, but I hope we can at least find something that will stop progression, because my mom had zero quality of life. There's no quality of life when you can't even communicate with your eyes, which she couldn’t do for the last five or six years. It would be so important to find a treatment that could at least improve on that. I do believe that ALS TDI is on the right path. I believe in them enough that I've been supporting them for many years. 

When we’re all walking together with our shirts on and people stop and look, they're reminded of the ALS cause. It’s been years since the Ice Bucket Challenge put ALS on the map. We got all that attention, but the more time that passes, people who aren’t affected don’t think about it as much. So, I'm happy to be out there in Newton, where everyone's showing that this is still important and affecting so many people. 

What has your experience participating in the event been like? 

I'm doing it with my closest friends who I've known for 20, 30, even 40 years. I'm 46. I've known some of them since childhood, some since college, or law school. They all join me and my brother, and it's so nice how they all come together around us. It’s such a supportive feeling. 

You also see the other teams, and you know what they've been through or what they're going through. I don't necessarily know everyone by name, but we all feel very welcomed. It feels like a smaller community; it's a smaller-scale event than what some people are used to, like the Walk for Hunger or the Pan-Mass Challenge. It feels a little more personal to me. It's really about walking, feeling like you're part of a team, and catching up with your friends as you walk. 

Why do you think it’s important to support ALS TDI through fundraisers like the ALS Walk for Research?

They're doing things that other ALS nonprofits aren't. The funds are going directly into research to find a cure. The services offered by other nonprofits are very helpful and important to provide a quality of life. But the ultimate goal is for people not to have ALS. It's not lost on me that, as we're walking, there are so many people out there right now who cannot walk because they have ALS. I think it's important to financially support the effort to find some kind of treatment, because there's not much out there. And I do believe that ALS TDI is doing that work.

To learn more and sign up for the 2025 Walk for Research on Sunday, September 7, at 10:00 am at Zervas Elementary School in Newton, MA, click here.

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