An Often Awesome Benefit: Kings hosts fundraiser

Two years. That’s all it took for ALS, a disease that affects nerve cells in the brain and spinal cord, to rob Greensboro’s Tim LaFollette of his ability to speak, walk and use most of his muscles.

In the face of a prognosis that’s decidedly terminal, the outlook isn’t good. But that’s not stopping the Often Awesome army, a crew of LaFollette’s friends, relatives and even strangers who have organized a benefit at Raleigh’s Kings Barcade tonight.

The event, which features performances by Bustello, The Breaks, The Alcazar Hotel, Spiralfire, Jeff Hart and Johnny Paul Jason, will raise both money and awareness for the disease.

“I just felt like this was a good way to do something for somebody who genuinely needed it,” said Models for Charity’s Hathir Pfau, who organized the event.

“I had met him on a couple of occasions, but for me it was more that we have a few mutual friends,” she said. “It seemed to me that it was a good cause, something personal. A lot of organizations are so global, and you don’t really have a face to put with them.”

Pfau is one of many who has volunteered time without knowing LaFollette personally. Andy Coon films the Web series that documents LaFollette’s experiences with ALS, also known as Lou Gehrig’s disease, on the Often Awesome website. He didn’t know his subject before he began filming.

“My friend Blake Faucette, he and I work together a lot of different projects, and he knew Tim just because Tim’s a musician and he shoots a lot of bands,” Coon said.

“We were just kind of throwing ideas around, and Blake said, ‘What do you think about doing a Web series on Tim?’”

From there, LaFollette’s cause and story has gone viral, gaining attention in the ALS community and beyond throughout the country.
For Catie Braly, an Often Awesome activist and one of LaFollette’s best friends, the impact has been startling. After an episode aired where LaFollette and friends got sparrow tattoos, Braly realized that the cause had grown far larger than a network of Triad friends.

“The tattoos that we were getting for our friend, all of the sudden people were getting them as an ALS awareness symbol — people who don’t know Tim. His ALS clinic doctor at Duke got one, his mother-in-law got one,” she said.

“There was a benefit in August of last year, or September, and Tim came out for that. There were 49 people who got tattoos that day. He said that when he was there, he looked around and did not know well over half of the people who were getting tattooed.”

Despite the organization’s accomplishments, “inspirational” is an adjective with which LaFollette and friends are often uncomfortable.

“He hates being called inspiring,” Braly said. “When you call somebody inspirational, you turn them into a cause and not a person.”

Coon was one of the people who learned about the ravaging effects of the disease on a more personal level through his chronicling of LaFollette’s life.

“I knew what ALS was before, but never did I know anybody who had it,” he said. “I grew up in New York, New Jersey. I kind of have a link to Babe Ruth, so I know about Lou Gehrig and I followed his story. It’s one of the worst diseases ever, so to see someone go through it is one of the worst things you can ever witness.”

There are few, if any, aspects of the disease that could be considered “awesome,” but the group’s name is an indication of LaFollette and company’s sense of humor. The name stems from a conversation between LaFollette and his wife, Kaylan Szafranski LaFollette.

“Kaylan asked him, ‘What do you want on your tombstone?’ Tim said, ‘I don’t know, what would you put on my tombstone?’ And she said, ‘I’d put Timothy LaFollette: Often awesome,’” Braly said.

Coon’s hopes for the Kings show are set on bringing Often Awesome’s message to the Triangle.

“I always want to keep the drum beating, and just trying to get his story out in front of new people and new areas,” he said.

While the widespread reception of the organization has been a pleasant surprise for many of the people involved, Braly’s hope for Often Awesome and tonight’s event is more straightforward.

“I want them to find out what ALS is,” she said. “I want them to remember my friend’s name. When he’s gone, he’s not going to be able to come out to any more shows or give any speeches or what have you. I want people to remember him because he’s an amazing person.”

Contact the Diversions Editor at diversions@dailytarheel.com.