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 twenty-five cousins in her generation; all but 3 of them have lost a parent to ALS.
Cheryl’s grandfather passed in 1957. When her father was diagnosed in 1987, she learned that her family was part of the 10% of all ALS cases that had a familial form (TDP43) of the disease. 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 together 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. But there are 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 six years ago, 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 made a decision to try and leverage their connections within the hop growing and brewing communities to help support their efforts to defeat ALS.
So, 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 a portion of their beer sales to ALS TDI.
The pilot worked.
From 33 participating brewers and proceeds totaling $130,000 in their first year, to over 140 participating brewers in 2017, and over $1,000,000 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 a treatment and cure 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, in particular with AT-1501. Everyone who works 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 taking action 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. If you are a brewer or know a brewer who would like more information about getting involved in Ales for ALS™ in 2018, please email us at firstname.lastname@example.org.