STAALS: Fighting ALS in Indiana
INDIANAPOLIS, IN — The fight against Amyotrophic Lateral Sclerosis (ALS) has become intensely personal and urgent for hundreds of Indiana families following the elimination of $2 million in state funding dedicated to ALS care.
In response, one Hoosier couple, who are facing the disease firsthand, started a grassroots non-profit, Stronger Together Against ALS (STAALS), to help the community and to secure additional funding.
STAALS was founded by Tim and Stephanie Werner, driven by their own seven-year journey with the disease. Tim, who was diagnosed in 2016 at the age of 34 is now defying expectations and using his time to advocate for roughly 700 Hoosiers currently living with ALS.
The Loss of Vital State Support
In an interview, Stephanie Werner explained the immediate crisis facing Indiana families. The Werners were instrumental in securing state grant funding for 2023-2025, which provided essential resources like wheelchairs, home accessibility renovations, communication devices, and caregiver grants.
“It was a devastating loss. To not have that grant funding, it’s a loss of hope and light,” Stephanie Werner shared. The funds were completely cut this year, leaving many families without the vital support they need for a disease that is terminal, progressive, and requires extensive financial resources.
Because ALS is considered an “orphan disease,” Stephanie noted that families receive very little assistance, forcing them to create their own support systems. “Facilities aren’t gonna accept a patient with ALS,” she explained, highlighting the immense difficulty and cost of finding private-pay, 24-hour care.
Focus on Direct, Immediate Assistance
STAALS is committed to ensuring 100% of donations go directly to Hoosier families. Stephanie emphasized their urgency, noting they don’t “want to sit around with a surplus in the bank.”
“There’s people that need it… We want to move quickly with our board and getting them, whether it’s, you know, materials ordered, getting people in their home to help make changes, whatever it is,” she said.
Currently, the non-profit’s projects include renovating a downstairs bathroom for a 20-year-old woman with ALS, whose mother and grandmother must currently carry her upstairs just to shower.
Building Community and Hope
Beyond financial aid, the Werners are focused on fighting the isolation that often accompanies ALS. Tim Werner has been organizing monthly ALS Luncheons for three years running, providing a critical social outlet.
“For some people, it’s such a task to get out of bed, get dressed, get out and do something,” Stephanie said. “That may be the only time that person and their caregiver gets out of the house for the month.” Despite the political setback—and attempts to reconnect with elected officials, including Governor Mike Braun’s office—the Werners remain fiercely dedicated to their mission.
Tim, communicating through a speech device, summarized their philosophy: “Don’t wait for the good things in life. Go get them, go do them… Life is short, you don’t know progression with this disease.”
The organization encourages the public to donate and connect to help bring hope, dignity, and practical help to the roughly 700 families living with ALS across the state.
To learn more about how to support Indiana families fighting ALS, visit the Stronger Together Against ALS website HERE.
