DE PERE, Wis. (WFRV) – A local family that has a rare form of Amyotrophic Lateral Sclerosis (ALS), or sometimes referred to as Lou Gehrig’s disease, is continuing to fight and research through their foundation.
The Weber family’s life changed forever in 1999, when their beloved father Art passed away from the cruelty of ALS.
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They learned a year later that they carried a genetic strain of the progressive neurodegenerative disease, or hereditary/familial ALS, an extremely rare occurrence, making up only 10% of all cases, according to the ALS Association.
Having hereditary/familial ALS meant that everyone in the family had a 50/50 chance of inheriting the disease, and the same chance of passing it down to their children. The Webers have tragically lost multiple loved ones to the disease, with several diagnosed already; however, the entire family continues to persevere and fight for a cure.
In 2021, the family created NextGenALS, a non-profit that sends its money towards researching the disease, which still has no cure. On Saturday, the foundation partnered with the Mid Vallee Golf Course in De Pere for a fundraiser.
“We started it about five years ago and NextGen is all about our family and the community that has come around us, raising money to create therapies for people with our type of mutation,” Richard Weber said.
Cathy Kettner, the organization’s president, was diagnosed with ALS in 2019, and she emphasized the importance of the event.
“It’s important to us because our kids have a 50/50 chance of inheriting this disease, and because of that, our goal is to find a way to slow or stop ALS before our kids become symptomatic,” Kettner said.
Kettner added that even despite the situation, they’re pushing forward with positivity.
“We’re a positive family with a positive outlook on life,” Kettner said.
Kettner gave a tearful thank you to those who continue supporting the families and the organization as well.
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The full event featured raffles, 18 holes of golf and numerous opportunities to donate, all in the hopes of finding a cure for the disease.
Please click the following link to learn more about the NextGenALS website and how to help.
