INDIANAPOLIS — Indiana's first ever ALS Awareness Day took place at the Statehouse on Friday, drawing attention to the rare, progressive neurodegenerative disease that affects hundreds across the state. According to the ALS Association, approximately 600 people are living with the disease in Indiana.
Every 90 minutes, someone is diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease. This budget cycle, lawmakers removed funding that supports individuals living with ALS, a cut that the ALS community deems devastating.
ALS has no cure, and symptoms often begin subtly, such as difficulty gripping objects or dragging a foot. As the disease progresses, it can severely impact mobility and eventually inhibit breathing. For couples like Stephanie and Tim Werner, ALS has transformed their daily lives. The high school sweethearts now live out their wedding vows of “in sickness and in health” every day.
"1999, a high school football game back in the day. Love at first sight, very exciting, now here we are,” said Stephanie Werner, whose husband is living with ALS.
Tim was diagnosed with ALS in 2018 at just 35 years old. The couple played a crucial role in securing funding during the last budget cycle, which allocated $2 million over the biennium. Advocacy groups emphasize that this small line item can yield life-changing results.
"The state funding has helped allow us to say yes when we get requests from folks in Indiana and help them bend, but not break when they get these high up-front costs and think, 'Oh lord. How are we going to afford this?’” said Alex Meixner, Vice President of State Policy and Advocacy at the ALS Association.
From wheelchairs to home renovations and communication devices, the costs for necessary equipment can be exorbitant and are rarely covered by insurance. For example, the Tobii Dynavox communication device that Tim uses to speak costs approximately $17,000.
As the ALS community faces this setback, Hoosiers are hopeful that the state will find another avenue to support this small but resilient population.
“Another loss for the ALS community here in Indiana. Without having those funds, we don't know where to turn next,” Stephanie Werner shared.
Despite recent challenges, the community remains united and determined in its advocacy efforts.
For more information about ALS and advocacy opportunities, visit the ALS Association's website, the Live Like Lou Foundation, and ALS United.
