The Krumenauer Family

Our ALS story is a bit out of sequence, which will be explained later in this story.  Our mother, Bernice, died from ALS in 2008 at the age of 82.  Bernice’s first symptoms were loss of strength in her hands and she was no longer able to knit or do embroidery.  When she started to stuggle with lifting her arms (about age 77) her family doctor referred her to a specialist with Marshifield Clinic in Chippewa Falls, WI.  It was during one of these visits that the specialist said “If I had to guess, I would say you have ALS”.  He then gave her information on an ALS clinic in Minneapolis -  Hennepen County Health (HCH).  It took several visits, beginning in 2003 to HCH before they could confirm that Bernice had ALS.  During one visit, we met with a genealogist that questioned us if any other family members had ALS.   We - son, Dennis, daughter, Jane and Benice said no.  Then she asked a series of questions related to physical symptoms, including problems related to neck weakness.  We all looked at each other and realized that Bernice’s mother, our Grandmother had that symptom for some time before she passed!

Theresa (Mother to Bernice) died in 1977 at the age of 79.   For several years before her death, she lived in a rest home and for most of that time, she was in a wheelchair and part of that time she wore a neck support.  Her family assumed that her body strength issues were most likely related to a mild stroke.  There never was a diagnosis of ALS.  Her ancestors are our connection to CHCHD10 and the familial ALS that we have in our family.

The beginning of Gary’s ALS journey:

In 2018, Gary fell and injured his shoulder and had rotator cuff surgery. Unfortunately, Gary never regained all of his strength in his left arm. Seeking out several medical opinions, the Mayo Clinic in Rochester, MN diagnosed Gary with ALS. As Gary’s mother, Bernice died from ALS in 2008, the doctor’s suspected that Gary had familial ALS. It was also determined through family stories, Gary’s Grandmother, Theresa, also had ALS. After going through genetic testing, it was discovered that Gary carried the CHCHD10 gene.  Gary, son of Bernice, grandson of Theresa, died in January 2023 at the age of 73.    

Gary wasn’t defined by his diagnosis. He continued working in the insurance industry up until he passed away. Gary took pride in his work ethic, crediting his success in the insurance industry to three things: “I never met a stranger, I treated everyone honestly, and I always hired people smarter than me,” he said. “I didn’t reinvent the wheel. I found the best wheel and held onto it.”

Gary’s pastime passions were showing cattle, restoring tractors, and building hot rods. He and his daughter Emily traveled each year to Denver, Colorado, to show their award-winning cattle. Over the years, they proudly won more blue ribbons than anyone else ever achieved! Gary also loved searching for old cars to buy and converting them into hot rods. He also loved hunting, fishing, farming, and spending time with his grandchildren.

Since Gary had witnessed his mother fight the disease, he was very proactive and was ahead of the doctors almost every step of the way. Fortunately, Gary’s wife of fifty years, Barb, had a thirty-plus year background in nursing. She was able to provide excellent care for Gary while he faced the challenges of ALS at home. Gary’s three daughters, Jessica, Erika, and Emily, and their families also jumped in to help. With the support of his family, Gary and Barb were able to remain home together until he lost his battle with ALS on January 20, 2023, fifteen years to the day after his mother died from ALS.

As a family - Gary’s wife, daughters (and their families), siblings and cousins - we want to figure out how to fight this disease. It started with Gary’s eldest daughter, Jessica, creating a post on the Familial ALS/MDS Facebook page asking if anyone had experience with the CHCHD10 gene. A year after creating that post, a woman from Pennsylvania, named Jen, reached out and said her dad had also been diagnosed with ALS and carried the same gene, CHCHD10. In November 2022, while being part of a clinical study at the National Institute of Health (NIH) in Washington, DC, Jen told the doctor about our family. He told her that because CHCHD10 is so rare, we must be related. Very quickly, we determined that we shared the same fourth great-grandparents. 

This led to a connection with the Weber family, founders of NextGen ALS, in eastern Wisconsin who also carried the CHCHD10 gene. We discovered that this family also shared the same great-grandparents. In a matter of months, Gary’s family went from knowing there were three family members who had ALS to learning that in our extended family, we have over 100 people who have passed away from ALS, are currently living with ALS or carry the gene. Now we are focused on working together to find a cure for the next generation. As there is a 50% pass through with this gene, Gary’s family is dedicated to finding a cure for ALS by partnering with NextGen ALS and becoming involved in ALS research and clinical studies.

Jessica Krumenauer Peuse, Erika Krumenauer Swansen, Emily Krumenauer, Dennis Krumenauer