A Life Story Foundation of Lakewood Ranch tries videos to raise ALS awareness

For quite some time, reality TV was the rage.

Only we all knew the reality was being altered to make it interesting for us.

I'm sure Lakewood Ranch's Kevin Swan would like to alter his own reality, but until they find a cure or treatment for amyotrophic lateral sclerosis, that isn't going to happen.

So when Swan talks about taking his own "living with ALS" reality program to YouTube, you can bet it's the real thing. No alterations needed here.

The short videos he is posting follow his travels around the community to show the challenges he faces on a daily basis. A simple trip to the restaurant isn't so simple. His wife often narrates the videos as she locks his very heavy wheelchair into place in their van and describes how the van needs to be customized to serve their needs; or she picks him up out of the chair with a bear hug to move him to the bed so he can spend time next to their daughter, 2-year-old Elliott; or she cleans and prepares piles of tubes and medications for the day ahead.

Swan, who was diagnosed with ALS Feb. 15, 2012, knows he must work as fast as possible to maximize awareness of the disease. The average life span for someone who has been diagnosed with ALS is two to five years. He understands he needs to make every day count.

The COVID-19 pandemic threw a wrench into that effort.

Typically at this time of year, Swan would be planning the Celebrity Bartender Challenge, a major fundraiser for this nonprofit. This year due to the pandemic, it's not going to happen.

Fortunately, the summer is a somewhat quiet time for his foundation's fundraisers, and his Cirque to Cure event held March 14 snuck in right before Florida went into a lockdown. A Life Story Foundation raised $135,000 during that event and they finished their fiscal year June 30 at $218,000, which was up over the previous year's $201,000.

The current fiscal year has gotten off to a rocky start. Julie Swan, Kevin's mom who tracks A Life Story's financial numbers, said since July funds have "fizzled."

"The pandemic has changed fundraising drastically," Julie Swan said. "We did do an event in Phoenix last summer, but it was a no go this year. The days of huge galas are gone. That's what prompted us to reinvent how to engage with our base and hopefully cast an even wider net through social media."

Although Florida's COVID-19 numbers have been trending downward the past two weeks, no foundation fundraisers (in person) are expected before the end of 2020.

"The pandemic doesn't seem like it's going to let up anytime soon," said Kevin Swan, who noted that even if it did, there probably wouldn't be time to add another event. "Events take months and months of planning."

He knew he had to take the foundation in another direction to reach people. He got together with a videographer to see whether videos of life with ALS would work on YouTube. He was hoping those videos could help answer the questions he gets about living with the disease from those with ALS or their families.

"We can become a resource for valuable information and as our audience grows, we become attractive to advertisers and sponsors," he said.

As people check out his videos on YouTube, they are asked if they want to subscribe to his page. If he gets more than 1,000 people to subscribe, YouTube will allow A Life Story Foundation to present some marketing information along with his videos. Kevin Swan said he needs less than 50 subscribers to reach that point.

Here's the link  https://www.youtube.com/c/ALifeStoryFoundation 

Meanwhile, he tries to keep his own life on a regular path. Like anyone, he said he has missed some of the simple pleasures, such as going to the movies or a restaurant during the pandemic.

"We were looking forward to watching Tom Brady in person," he said.

Through it all, Swan said he is most likely more equipped than most to change directions due to a challenge.

"The idea of difficult or challenging times is a space that I am very familiar with," he said. "So I suppose I am trying to focus on the little things every day. We are a family that relies heavily on our faith." 

Shaina said her husband won't let the pandemic, or whatever comes next, stop his efforts to raise ALS awareness.

As she said on one of the couple's YouTube videos, "We will pick the next mountain, and move it."