Cathy Kettner and Jim Weber on Familial ALS, the Importance of Advocacy, and Who They are Fighting For

About 10 percent of all cases of ALS are due to genetic mutations and are inherited from a family member. If there are two or more family members with ALS, the disease is considered familial, and there is a 50% chance of passing that mutation on to each of his or her children.   For siblings Jim Weber and Cathy Kettner, it’s the 50-50 proposition that brings them to the fight. 

Kathy was diagnosed with ALS in 2018. Jim was diagnosed in 2012. It is a family tradition they don’t wish to preserve. 

“My father died in 1999, my sister was diagnosed in 2000, she lived until last year in October,” Cathy said. “I have an older sister who is living with ALS, Jim, who is living with ALS for eight years, and another brother Richard who was diagnosed a month ago. We have two cousins in our family who have it, both from different families, and we have nieces and nephews who are certainly running scared,” she said. 

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“It Makes You Look at Life a Different Way.”: Chip Carton on Living with ALS

When Chip Carton arrived at his doctor’s office in 2008, he was 47 and feared the worst. 

“They had me go in for a brain tumor,” he said, “and the doctor came in and said, ‘Oh no, you don’t have brain cancer.’ So, I was elated.”

The doctor had more testing in store. ‘But I do want you go down the hall to the ALS clinic,’” Chip recalls.

Chip said he was completely unfamiliar with ALS at the time. 

“I was still just sitting on high,” he said. “Then the final person came in and said, ‘This must be a very hard and long day for you.’ And I said, ‘Why?’ ‘I just found out I didn’t have brain cancer.’”

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Everyone Can Make a Difference in the Fight Against ALS

Meet Connor Way.  Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.”  But there’s something different about Connor’s story, his “Papa” had ALS.

In 2017, Bill Beaton, better known as “Papa,” began having some odd symptoms of weakness in his legs.  Like many people diagnosed with ALS, he went to his fair share of doctors and had many tests run, even a back surgery hoping to solve the problem.  Never in a million years did he and his family expect to finally hear the words, “You have ALS.”

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Challenging Our Youth to Join the Fight Against ALS

An ALS diagnosis is not only devastating to the person receiving it, but to their entire family, and kids are all too often the collateral damage. The disease forces many kids to pitch in as caregivers and often delay their educations. Kids who serve as caregivers often talk about feeling isolated and unsupported by their peer groups. 

In order to help empower kids in the fight against ALS, The ALS Association is celebrating the second annual ALS Youth Action Day on Saturday, May 16. It’s a day where kids across the country can take the ALS Youth Challenge and use the power of their creativity to help raise awareness and critical funds that help researchers around the world look for treatments and a cure while enabling people with ALS to live longer, higher quality lives. 

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“You’ve Got to Dwell on the Positive … What You Can Do.”: Gary Trosper on Living with ALS

Gary Trosper was a transportation executive before he was diagnosed with ALS in 2015. After two years, he was forced to retire due to his symptoms, but he knew he didn’t want to just sit around: he wanted to make a difference. Acting as an advocate and taking action for himself and others is very important to him.

Gary’s symptoms started back in 2013 with difficulties with his hands. “I started having problems while typing, being able to reach up to the next key, on just my index finger on my right hand. And so, it never got really a whole lot worse, but I started also having a wasting of muscle between my index finger and my thumb, in the web in my thumb on my right hand,” he said. After two years of doctor visits and tests, he was finally diagnosed by the ALS clinic in Kansas City. 

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“You Find an Inner Strength that You Never Knew You Had.”: Troy Fields on Living With ALS

Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.

“I was just kind of going about my business, taking care of my family,” he said. “And one day, you try to button your shirt or tie your tie, and you can’t quite get the strength to put the button through the hole, and you kind of realize at that point there’s a problem.” After months of doctor appointments and lots of tests, it was confirmed he had ALS.

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