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Originally published Monday, July 8, 2013 at 8:35 PM

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Craft brewers raise money for ALS research

A fundraising effort launched in Yakima County has microbreweries raising money for research into Amyotrophic lateral sclerosis, often called Lou Gehrig’s disease.

Yakima Herald-Republic

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MOXEE, Yakima County — It’s called Bubba’s Brew, an extra pale ale on tap at Bale Breaker Brewing on Birchfield Road.

And while the new brewery has other brews available, this one is special. Mike and Cheryl Smith, whose children own the brewery, hope Bubba’s Brew will help find a cure for a disease that has stalked Cheryl’s family for generations.

The disease is Amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease, an incurable disease that affects nerves in the brain and spinal cord.

“Bubba” is 56-year-old Scott Hanses, Cheryl Smith’s brother, who has ALS as do two other members of her family.

Bubba’s Brew is the local manifestation of a fundraising campaign aimed at craft brewers across the country in which brewers have agreed to donate $1 for each pint of beer they sell using a special mix of experimental hops.

Nearly 50 breweries have agreed to participate, and Mike Smith hopes the number can grow to several hundred, enough to generate as much as $1 million a year for ALS research. There are about 3,000 craft brewers in the United States.

The campaign, Ales for ALS, grew out of a suggestion from their daughter, Meghann Quinn, who owns Bale Breaker along with her husband, Kevin Quinn, and her brother, Kevin Smith.

When the idea began to jell in October, the Smiths 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.

“For this first year, we wanted to keep the brewer numbers small so we could do a good job of catering to them,” Cheryl Smith said.

That didn’t happen, Mike Smith 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 Smith, 58. “To see someone gradually lose all motor control but be perfectly sound mentally affects you.”

Amyotrophic lateral sclerosis 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, for which no cure exists, leads to paralysis and death. Sufferers may 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. A large-scale, multiyear clinical trial can cost up to $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 in a telephone interview. “That is why what the Smiths are doing is so critical.”

An estimated 30,000 people in the U.S. have ALS at any one time. 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 Hanses-Smith’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 suffers from ALS.

Twenty-five of her 28 cousins have a 50-50 chance of having the gene that causes ALS.

The feeling of being helpless in the face of such devastation prompted them to launch the campaign.

“Part of the reason Mike and I have put our arms around this fundraiser is because it is something you can do,” she said.

Cheryl said she has chosen not to be tested to see if she carries the gene that causes ALS. She said there is nothing she could do about it.

“If I found out I had it, I could live with it,” she said. “Also, if I found out I would know my three kids might have the gene. That is what holds me back.”

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