INDIANAPOLIS — Approximately 4,000 people in Indiana live with Amyotrophic Lateral Sclerosis, or ALS, a progressive disease that causes people to lose the ability to walk and speak. Because of how serious and fatal the disease is, the ALS Association holds an annual walk to raise funds for the thousands of families it helps. This year’s Walk to Defeat ALS will be held Sept. 20 at the Indiana State Fairgrounds.
The ALS Association says the fundraiser is more important than ever, especially for families like the Johnsons.
Denise Johnson is Micah’s mom. Micah was diagnosed with ALS at 19 and has been living with the disease for about a year, although Denise says symptoms were showing up before she knew what they were as young as 16. The National Institutes of Health says she is one of only a thousand people under 25 with what is commonly known as Lou Gehrig’s disease. She is also living with sickle cell disease.
"You have hopes and dreams for your children, and she's just a wonderful, sweet, beautiful young woman, and it was heartbreaking for me as a mom and as a parent,” Denise Johnson said.
Throughout the Johnsons’ home are remnants of Micah’s life. The show choir performer and musical enthusiast has kept her upbeat personality in spite of declining health. Her voice is starting to get weaker and her mobility is getting worse, but she does not let that dampen her outlook on life.
"I just choose not to dwell on the negative and things that will keep me down,” Micah Johnson said. “I really know that there is a plan with what comes into my life."
With ALS coming into her life, so have medical expenses. The Johnsons have received help from the ALS Association to purchase items and equipment Micah needs to be comfortable. The group helped her get a bed that allows her to sit up at night; lying flat can make it harder for her to breathe. They were also able to get a portable electric wheelchair for Micah — a piece of equipment that allows her to be mobile and get out of the house. That type of chair is rarely covered by insurance. Despite the $3,000 price tag, the ALS Association provided a chair for Micah.
"Without that village of the ALS association. Would this be a harder journey?” asked WRTV’s Meredith Hackler.
"You can save but you dwindle through your savings very quickly,” Denise said.
Now, the ALS Association faces its own financial hardship. During the 2025 legislative session, lawmakers cut a $1 million-a-year line item dedicated to the organization.
"That has impacted the way that we can provide services to families and people living with ALS,” Oliva Smith, the development coordinator for the ALS Association of Indiana, said. “Whether that's like home respite care or transportation to the clinic. "
The money the association raises during the walk goes directly to families like Micah’s. The association also connects people living with the disease to others facing the same challenges.
"It's super nice to meet a group of amazing women that are kind of in the same boat with you."
A boat filled with love, compassion and hope.
This year’s Walk to Defeat ALS will take place Sept. 20 at the Indiana State Fairgrounds. Meredith Hackler has been asked to emcee the event. If you want to know more, you can register and find information by clicking here. If you would like to donate to Micah's team specifically, click here.
