Still Walking for a World without ALS, Even in a World with COVID-19

We are a little bit more than a week away from the 2020 St. Louis Walk to Defeat ALS, and just a couple of days away from Father’s Day as well. Because of COVID-19, both will be different than they have been in years past, but both are still important.

As you have heard, for the safety of the people with ALS we serve, their families, our staff and supporters, the 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park on June 27. We will still be walking to defeat ALS, but we will all be walking where it safe for all involved: down your street, in your neighborhood park, around your coffee table, just about anywhere you can think of. This year we are asking you to make the Walk your own.

And while we won’t all be gathered together physically this year, we will gather digitally. Starting at 9:45 a.m. on the Walk to Defeat ALS Facebook page, we’ll be sharing content about this year’s Walk and how all of you are still making a difference for people with ALS and their families. We want to see how you are “Walking Your Way” as well, so when you post about your Walk on social media be sure to use the #ALSWalkYourWay hashtag so we can share it with others.

The Lato family (pictured above) had hoped to be in Forest Park on June 27 with the rest of the ALS community. Scott Lato was diagnosed with ALS in March 2019, and last year they made the trek to Forest Park to experience their first Walk to Defeat ALS. Then the rain, and lighting, came.

“We had a canopy tent set up next to the van, that’s where we all congregated,” says Scott’s wife Bernadette. “People still showed up, even with the rain, and we made the best of it.”

Still, with the lighting in the area making it unsafe for everyone to walk as planned in 2019, the Lato family was eager to experience the Walk to Defeat ALS in 2020. They were further excited when they learned that Scott had been selected as a ribbon cutter for this year’s Walk.

“We were so honored (to be selected as ribbon cutters),” says Bernadette. “Then we were sad to hear the in-person walk was canceled. But we are still excited about bringing awareness about ALS.”

But the Lato’s decided to make the best of it, like they always do. They’ve embraced the Walk Your Way plan and will still take part as ribbon cutters, albeit in a virtual format. After that, they have decided to make this year’s Walk unique, and fun, for them. You see, they have TWO power wheelchairs.

“For our Walk we are probably going to include wheelchair races,” says Bernadette. “Scott, of course, will win, because he knows how to operate the chair better than anyone.”

The races won’t be the only part of their home-grown Walk, however. Bernadette hopes they can draw a (social distances, of course) crowd in their neighborhood. “I anticipate people coming, and we’ll do a Walk in our subdivision,” says Bernadette. “We are bringing it home, bringing it local, and I think that’s the silver lining, that a lot of people are planning similar strategies to do it in their neighborhoods.”

Bernadette makes it a point to look for the silver lining when facing the challenges of ALS. It is never easy, and COVID-19 hasn’t helped any. The need to limit those in contact with Scott has been especially difficult.

“I think the biggest thing we struggle with is everyone that wants to see him, and help him, and can’t,” says Bernadette. “He can’t really talk on the phone anymore, so there’s been a lot of heartache in that people want to see him, but based on the recommendations of the doctors, we have to limit that.”

COVID-19 has, however, created more family time for the Lato’s. And as Father’s Day approaches, Bernadette is happy their three boys, ages 9, 12 and 18, have been able to spend more time with their father this year.

“Had COVID not happened, the boys would have been at school all day as normal, so it has been nice they have been able to spend more time with their dad, watching movies, doing things they enjoy together,” say Bernadette. “When I’m downstairs working they’re upstairs spending time with their dad, when otherwise he’d be alone.”

The Lato’s have made it their priority to enjoy every moment they have together, even during these challenging times. We too hope you’ll make the most of the 2020 St. Louis Walk to Defeat ALS as you find the best way to Walk Your Way. Remember the #ALSWalkYourWay hashtag so we can see you all making a difference in the fight to defeat ALS. This year we need you more than ever. ALS does not stop, and neither do we.

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