20-05-2025
Local family shares experience with familial ALS and efforts to fund research to find a cure
GREENVILLE, Wis. (WFRV) – In a story of resilience and hope, the Weber family stands as a reminder of the impact of familial bonds in the face of adversity.
In 1999, Art Weber passed from amyotrophic lateral sclerosis (ALS), a devastating degenerative disease. A year later, his nine children received news that they carried a genetic strain linked to ALS, with six already diagnosed.
Each family member now faces a daunting 50-50 chance of passing this hereditary condition to their own children.
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Jean Micke, a member of the Weber family, expressed the profound unfairness, stating, 'We have five children and nine grandchildren.' Jean herself received an ALS diagnosis in 2020, confronting unimaginable challenges.
Cathy Kettner, president of NextGen ALS and another member of the family, shared her sorrow, recounting the losses of her father and two sisters, Peggy in 2018 and Cindy in 2021.
The oldest sibling, Sharon Sprangers, though symptom-free, has witnessed the toll ALS has taken on her family.
'When Cathy told me she had ALS, it dropped me to my knees,' she recalled. The struggle deepened when her son Sawyer revealed he carries the gene. 'It's not an easy thing,' she added.
Amid the heartache, the Weber family is participating in a promising clinical trial in New York, which aims to halt the progression of ALS. Every three months, they travel to receive spinal injections designed to combat the toxic proteins that attack their muscles.
Sharon shared their hope, stating, 'We found it in our mouse models at Weill Cornell, and now Columbia University is delivering the shots.'
In 2020, out of their shared experiences and determination, the Weber family founded NextGen ALS, a nonprofit dedicated to raising funds for ALS research.
Cathy, diagnosed in 2019, emphasized the organization's mission: 'Sharing and having people understand what ALS is, is vital to our role as an organization.'
Support for the Weber family extends beyond their own ranks. Jim Weber, diagnosed with ALS in 2012, receives vital assistance from the Veterans Affairs (VA), which provides benefits for home renovations and necessary equipment.
His caretaker, Gregory Beyer, who has faced his personal losses from the disease, describes his role as rewarding.
'To take care of Jim, it's 24/7. It's nonstop. It's okay because I love this man; he's a good guy,' Gregory shared, highlighting the joy they find in life despite the challenges.
The Weber family's unity and determination shine through in their fight against ALS. With each passing day, they remain hopeful for a cure to the disease that has taken so much from them.
'I want to say how very proud I am of my sisters and brothers,' Sharon declared, embodying the strength of their bond.
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NextGen ALS is currently in the middle of a mayhem raffle and preparing for a charity golf event on Saturday, June 21, to further support ALS research.
The four-person scramble will kick off at ten at Mid Vallee Golf Course, with all proceeds directly benefiting the cause. For those looking to make a difference, registration is available online.
Together, the Weber family exemplifies courage, resilience, and an unwavering commitment to fighting ALS, inspiring others to join in their quest for a brighter future.
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