Grandfather.
Father.
Uncle.
Aunt.
Aunt.
Aunt.
Uncle.
Cousin.
Brother.
These are members of Cheryl Hanses’ family who she knows passed of ALS or are currently battling the disease. Look at it this way: Cheryl has 25 cousins in her generation; all but three of them have lost a parent to ALS. ALS is a progressive neurodegenerative disease that attacks cells in the brain and spinal cord, leading to muscle weakness, paralysis, and eventually, death.
Cheryl’s grandfather passed in 1957. When her father was diagnosed in 1987, she learned that her family is part of the 15% of all ALS cases with an inheritable, genetic form of the disease – in this case, a TDP43 mutation. Since then, one by one, Cheryl’s uncles and aunts learned that their fate had been decided for them, too. And ALS took them all too soon.
All the Hanses family knows is a life with ALS. ALS is their norm. ALS is a part of their collective legacy. “We’re not victims,” says Cheryl. “We are strong. And we are very close. We have gathered so often for ALS funerals; these events have helped the family bond grow stronger.”
An unchanged future
Cheryl, her siblings, and their cousins were in their twenties and thirties when it was clear that ALS had uninvitingly joined their family. It was the 1980’s. The cousins assumed that by the time they were their parents’ ages—in their sixties and seventies—that a treatment or cure for ALS would be found.
Today, they are their parents’ ages. However, there are currently no effective treatments to stop the disease and no cures. And one by one, the cousins are getting tested for the mutant gene. A few of them have tested positive, a few negative, and others just don’t want to know.
Breaking the cycle
It was when Cheryl’s older brother Scott was diagnosed in 2011, who has since passed from ALS, that she decided to look more closely at the work of the ALS Therapy Development Institute (ALS TDI). “I had to do something; I realized I needed to look to the future,” says Cheryl. “It was clear that ALS TDI was trying to get out in front of the disease. That made sense to me. It still does. And while the future is what drives them in their work, the organization’s history also resonated with me. It meant a great deal that ALS TDI was founded by a family like my own.”
So, Cheryl and her husband Mike Smith started a movement with one goal in mind: to raise as much awareness and as much money as possible to support research at ALS TDI. What she and her family did next would impact the pace of that research in a very significant way.
A novel approach
Mike Smith is a third-generation hop farmer in Yakima, WA; his family has been growing hops since 1932. Cheryl and Mike decided to try and leverage their connections within the hop growing and brewing communities to help support their efforts to defeat ALS.
In 2013 they piloted “Ales for ALS™,” a concept where participating brewers would be offered access to a proprietary hop blend, free of charge. In exchange, the brewers would brew special beers with these hops and then donate some proceeds to ALS TDI.
The pilot worked.
From 33 participating brewers and proceeds totaling $130,000 in their first year, to over 300 participating brewers in 2023, and over $6,000,000 raised to date, the program has grown each year. “Now breweries across the country hear about the program and they reach out proactively,” says Mike. “They want to join the effort because they know someone who has been or is battling ALS. This disease is not as rare as it’s made out to be.”
Cheryl and Mike want to be a part of the solution; they believe strongly that treatments and cures will be found at ALS TDI. “I can feel a change,” says Cheryl. “ALS TDI is making a difference. There is real hope on the horizon now. Everyone at ALS TDI is passionate about finding a treatment and cure. Supporting their work just feels right.”
Cheryl and her cousins are driven to change the course of their family’s history: “My cousins and I have watched our parents, aunts, and uncles battle the disease, and yes, we ourselves are being and will continue to be affected too,” she says. “But we all hold hope in our hearts that the upcoming generations will not have to deal with this disease. We are acting now and supporting ALS TDI so that our children and our children’s children can look forward to a time when ALS is not in our family, but instead just a mention in their history books.”
Cheers to that, Cheryl!
____________________________
Today, there are Ales for ALS™ participating brewers in nearly every state in the US and many countries around the world. If you are a brewer or know a brewer who would like more information about getting involved in Ales for ALS™, please email us at alesforals@als.net.
This blog was originally published in 2017 and republished with updated numbers in February 2024.