ALS Art Auction Continues Friends' Fight for Dan

Dan Soyka’s speech was becoming increasingly slurred.

Then one day at a party, he took a nasty tumble.

“I just thought he was wasted,” friend Jami Shapiro said.

Now Dan can’t speak or swallow. He uses a syringe to eat and drink through a feeding tube and breathes with the aid of a tracheotomy in his neck.

The hardest part for him, new wife Lisa said, is not being able to talk.

“He was the life of the party, cracking jokes,” she said. “I miss him.”

Dan’s slurred speech was an early sign of ALS (Amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease), an incurable disease that slowly degenerates nerve cells in the brain and spinal cord. It affects voluntary muscle movement until a person is essentially trapped in his or her own body.

It affects 5 out of 100,000 people, usually over age 50, according to the U.S. National Library of Medicine. On average, a person survives three to five years after diagnosis.

Dan, 34, was diagnosed in February.

Dan grew up primarily in Dunedin, but life took him to the Atlanta area. He met and began dating veterinarian Lisa Craig in 2009. They married at the Episcopal Church of the Ascension in Clearwater with a reception at next to Honeymoon Island in June.

His family and friends wasted no time rallying to his side. They began a Facebook fundraising campaign called “Our Friend Dan” in August, and came together as “Team Soyka” in the ALS Association Walk to Defeat ALS on Oct. 22 in Atlanta.

The group raised about $32,200, more than any other participating team in the walk. Dan’s sister, Autumn Soyka, 31, of Dunedin, had recently moved to Charlotte, N.C. She led the team in fundraising and was a driving force in the charge against ALS.  

“She showed how we could put all our energy in and get something positive out of it,” Lisa said.

That was the last time they saw her.

Autumn was when a drunk driver struck her as she crossed into a dangerous pedestrian area. She had just left a Charlotte nightspot.

“She saw the good in everything,” Lisa said. “She just sweat out positivity. … I want to be like her.”

More than 400 attended Autumn's funeral service at the same church where Dan and Lisa wed roughly four months earlier.

Dan was hospitalized that same morning, suffering from a second bout of debilitating pneumonia within the month.

"Now I just don't know what the hell is going to happen," Lisa said.

Dan and Lisa didn't return to Atlanta. They moved into a spare room in the family's home on Aberdeen Street, where Autumn told Lisa they should have been all along.

"It was one of Autumn's biggest things," Lisa said, "She kept saying, 'You gotta get down here. ... It's so important to enjoy the time you have when you can still walk and do all these things. You don't know if you have one month left with him or 10 years'."

After Autumn's funeral, Lisa stopped working to become Dan's primary caretaker. His mother, Lynn Soyka Lemmon, also helps.

"We’re not going to let it ruin our life. Obviously it’s changed, but we’re not going to let this disease define us," Lisa said.

Our Friend Dan rallies again. This time, with Autumn's energy behind them, the group organized a silent art auction running through Jan. 25. Local artists donated works — some by area tattoo artists, photographers and mixed media artists — now hanging in , and . 

The auction culminates with an Art Bash at on Jan. 28 (6 p.m.). The event promises live music and raffles (artwork and a Key West vacation package have already been donated as prizes), and the Dunedin House of Beer is donating $1 from every beer purchased to the Our Friend Dan fundraising efforts.

The group will be at Dunedin Brewery on Friday (Jan. 6) for a meet-and-greet at 8 p.m.

"I don’t see him losing to this battle," Lisa said. "Every day, I have hope."

Bidding on the art runs through Jan. 25.

"Friend" Our Friend Dan on Facebook at www.facebook.com/ofdsoyka.