When the idea began to gel in October, the Smiths said they didn’t know how the concept would be received or how rapidly it would grow. With brewers from California to Connecticut coming on board and industry bloggers talking about it, the campaign has developed much faster than they anticipated, they said.
“For this first year, we wanted to keep the brewer numbers small, so we could do a good job of catering to them,” Cheryl said.
That didn’t happen, Mike said, because a surprising number of craft brewers — those with fewer than 6 million barrels brewed per year — have had some experience with the disease.
“Anyone who has witnessed it up close is impacted,” said Mike, 58. “To see someone gradually lose all motor control but be perfectly sound mentally affects you.”
ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord. When motor neurons die, the brain can no longer initiate and control muscle movements. The disease leads to paralysis and death. Sufferers live up to five years after diagnosis.
The money raised through Ales for ALS is going to the Massachusetts-based ALS Therapy Development Institute, a nonprofit biotechnology company working on effective treatments.
Steve Perrin, institute president and CEO, said the institute and other research organizations are conducting clinical trials to find treatments for ALS sufferers. A large-scale, multi-year clinical trial can cost as much as $50 million. The institute operates on donations of about $12 million per year.
“The more money you can throw at a disease, the more likely you are to have a treatment,” Perrin said. “That is why what the Smiths are doing is so critical.”
An estimated 30,000 people in the U.S. have ALS. Most cases are random, and it affects more men than women. A minority of cases — less than 10 percent of the 5,600 new cases diagnosed each year — are genetic.
The gene runs in Cheryl’s family. She lost her 59-year-old father to ALS 25 years ago, just as his father before him. The disease has claimed the lives of five of her seven aunts and uncles. A sixth currently has ALS. Twenty-five of her 28 cousins have a 50-50 chance of carrying the gene that causes ALS. Cheryl has chosen not to be tested.
