Battle with ALS sparks action

LAKEWOOD RANCH — When the diagnosis came — after doctors struggled for months to name the disease that would slowly cripple him — Kevin Swan kicked his legs into the air like a bike.

“There’s nothing wrong with these guys!” Swan shouted, pointing to his legs.

“I was imploding,” said Julie Swan, Kevin’s mother and a retired vice president of Sysco Corp.

The disease that would force Swan, 30, to quit his job as communications director of a major firm in Chicago now had a name — amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease.

Now, it was time to fight.

“I have always been afforded great opportunities, though I’ve never been given anything,” Swan said. “This seemed like another opportunity.”

Two days after the diagnosis — Feb. 15, 2012 — Swan walked for the ALS Association in Sarasota. The event raised more than $85,000, but the man whose job once required him to promote visibility while overseeing social media, client communication and press releases, wasn’t impressed with its execution.

“You need more engagement,” Swan told the organizers. “So, now, I’m just moving. What can I do next?”
In June, Swan created A Life Story Foundation, playing on the acronym ALS. The organization matches awareness with action.

From a desk overlooking Lakewood Ranch Main Street on a second-floor apartment above a bike shop, Swan writes the copy for event flyers and crafts a business strategy for the organization. His voice strained after a day of conference calls.

The calls leave him grasping for water, but his hands are too weak to hold a bottle, so his parents or his best friend, Ashlie Fulmer, feed it to him.

So far, with a business model that spends 40% of its money on awareness and 40% on research, partnering with the ALS Therapy Development Institute, Swan’s organization has raised $155,450.

Fulmer is a partner in A Life Story and a teacher at Haile Middle School. She and Swan met in eighth grade, at Braden River Middle School.

When Swan played high school football at Southeast High School, Fulmer was a cheerleader and soccer player.

Swan had played wide receiver as an undersized, scrawny Pop Warner player since he was 9. He fought for playing time — a decision he doesn’t regret, although inconclusive evidence points to head trauma from contact sports as a potential cause of ALS.

“Football taught me to fight like I am now,” Swan said.

Swan and Fulmer were together, in Ethiopia, when Fulmer adopted her son in 2010.

Shortly after, in New York City, Swan scrapped for position in a pickup basketball game.

A big man fell on him. Swan heard a pop. It must have come from his arms and chest because they felt flexed, as if they were pumped after a weight-lifting session.

Those early symptoms prompted a search for answers — from neurologists, infectious-disease specialists and Google searches — that pointed to ALS.

Some days, he’d be exhausted but try to rationalize the cause.

“Did I just not sleep enough?” Swan said. “Am I hung over? Or is it the ALS?’

When the diagnosis at Northwestern Memorial Hospital in Chicago confirmed what he knew, Swan told his bosses.

He only took two days off from then until July, when he moved to Lakewood Ranch to be near his parents, who are building a home in The Lake Club.

Today, Swan’s days start and end alone, but always require company in between.

Swan wakes at 7:30 a.m.

Before he fields emails and calls for A Life Story, Swan eases into loafers, shorts and a golf shirt. He must choose clothes without zippers or buttons, which require too much finger strength.

After bathing, he walks to Starbucks on Lakewood Ranch Main Street, where the servers know Swan by name and know to fit his bag with a handle.

His drink is always iced, so he can use a straw.

Swan enjoys eating sushi, and his parents aren’t afraid to feed it to him in restaurants anymore. And Swan isn’t too prideful to receive it, although he has fired his father, Ken, from feeding him because of poor technique.

“Feeding is an art,” Swan said.

Swan winks when he’s had enough food.

Twice a week come rides to physical therapy.

Swan feels no pain — just weakness that cripples his ability to complete everyday tasks.

When he works, Swan uses an iPhone application, Dragon Dictation, that allows him to speak to write texts and emails.

He blogs for The Huffington Post once or twice a week about his experience with ALS and A Life Story Foundation.

The disease has changed Swan’s life — and his family’s — in both good and bad ways.
The Swans are closer now. And, they’re together.

Swan’s 22-year-old brother, Zack, an international relations major at Boston University, is trying to get a job locally.

“Despite dealing with ALS every day and running a organization dedicated to beating it, I haven’t thought about ALS all day,” Swan said.

Contact Josh Siegel at [email protected].

IF YOU GO
All in for ALS Casino Night
When: 6:30 p.m. Friday, May 10
Where: The Lake Club, 15804 Clearlake Ave., Lakewood Ranch
What: An event for A Life Story Foundation, an organization Kevin Swan created to fight ALS. Festivities include elegant food, a live band, wine and gambling.
Cost: Tickets are $100.