Amyotrophic lateral sclerosis (ALS)—a disease that gained worldwide attention this summer thanks to a viral fundraising campaign—has garnered particular attention in Brunswick and at Bowdoin. Grounds Coordinator Kirk Favreau is living with the disease.

In recent months, ALS has received attention thanks to the “Ice Bucket Challenge,” which  has raised over $100 million for the ALS Association. ALS is characterized by the degeneration of motor neurons which can cause difficulty moving, speaking, breathing and swallowing.

Thirty-thousand Americans have ALS, including Favreau, who was diagnosed with ALS in April of last year. The first symptom he experienced was foot drop (difficulty lifting the front part of his foot), and it eventually progressed to the point where ha could no longer heel walk. He visited the emergency room where they checked for a tumor on his spine—results were negative. It was after a visit to a neurologist that ALS was considered a possibility.

Favreau said of his conversation with the neurologist, “Without knowing anything about it, I was like, ‘Oh, Ok, how do we take care of it?’ And she just started shaking her head.”

 After multiple second opinions, blood tests, a spinal tap and treatment for another possible disease, the diagnosis was confirmed. It was definitely ALS. Favreau’s legs are now very weak, and he must walk with the aid of crutches or by holding onto things around him—“furniture walking,” he calls it. Favreau is working on outfitting his home with bars and other features to help him. He says Bowdoin has been very helpful by remodeling bathrooms so that he can access them, and moving his office downstairs for easier access.

Friends of Favreau’s have also stepped up to help him. It was during one of their poker nights that Brenda Hale, her brother George, who works with Favreau, Kimberly Garlick and other friends first discussed fundraising options.

“Brenda was going to do it to help me out—being a friend,”

Favreau’s supporters have now planned multiple projects to raise money for his healthcare expenses, most notably a partnership with Buck’s Naked Barbecue’s bike night charity events and a wristband campaign.

In early September at the Walk to Defeat ALS, in Portland, Hale and Garlick approached Todd Sanders, a bike night organizer and an old friend of Hale’s, about doing an event for Favreau. It is now scheduled for October 15.

Hale expects significant proceeds from the raffles and auctions at Buck’s Naked Barbeque, and says the wristbands have also been popular.

They initially ordered 800 of the bracelets and Hale said that if they run out, they are ready to buy more. The blue and white tie-dyed wristbands read, “Kirk Favreau’s Fight Against ALS.” They cost three dollars and many customers have paid more than asking price to support Favreau.

Donations to big organizations often go toward helping fund operational costs instead of toward research. While some are hesitant to donate at first, once they realize all proceeds are going directly to Favreau, they are more inclined to help.

Various vendors in the area are already selling wristbands, including Libby’s Market, a favorite among Bowdoin students and Brunswick residents.

Dan and Tina Libby, the owners of the deli, have been close friends with Favreau, whom they inexplicably call “Belvedere,” for over two years. He comes in every morning at 5:40a.m. for what the Libbys call his “daily shot of oatmeal,” and has since become a beloved fixture of the market—he even has his own table there.

“He’s got one of those sincere belly laughs that’s contagious,” said Tina Libby.

Libby’s started selling the wristbands in early September. Their sales raised over $800 in a matter of days.  

The Libbys have been able to personally observe the rapid progression of Favreau’s ALS. According to the couple, it is now evident that he has trouble walking and must plan out each step he takes.  

Dan Libby feels as though he has known Favreau since they were children. Witnessing his friend’s illness has changed his perspective on many things.

Recently, when Favreau asked Libby to help him fix his roof, Libby took care of it. However, in hindsight Libby wishes he would have handled the situation differently.

“Looking down, I knew I had made a mistake,” he said, “[I] should have helped him onto the roof. It would have been the last time he could have done it.”

Along with raising money for Favreau, the Libbys aim to use their presence in Brunswick to increase awareness for ALS.

“It’s not until something strikes someone you know that your awareness goes up,” said Tina Libby. “[Kirk] just has such a way of touching people to their core, and he really makes you think.”

Dan and Tina Libby are cherishing the opportunity to make more memories with their friend. 
Due to this summer’s activism, Favreau’s diagnosis comes at a significant moment in the history of the ALS community.

“It’s very strange for it to be so public right now, now that they diagnosed me with it,” said Favreau. “But I think it’s great—there’s people who go to bed trying to work on a solution every day, and they wake up thinking about it. At one o'clock today someone could say, ‘Oh wow, there’s a cure!’”

Favreau, for his part, is continuing to work and enjoying and the energy of the students around him.

“I’ve been here nineteen years and the students never get any older,” he said, “I think I’ve discovered the fountain of youth.”