Humor, heart, and a 100-foot circle of care. For Lisa Kostrzeski, a 43-year-old Chicago native and registered nurse of 22 years, these are the tools her family uses to navigate life with ALS.
“I’ve always been a talker, and I feel like I’m silent in a way, because it takes so much energy to talk,” says Lisa. “My hands don’t work… you’re constantly asking for help, and it almost feels like you’re a burden. But worst of all, I can’t give the middle finger anymore—and that is the love language in our family. We have to try and keep it positive and incorporate humor.”
Lisa was diagnosed in January 2023. After a year of “devastating denial,” her family—including her husband of 20 years and her three daughters, twins Angela and Ashley (17) and Kari (14)—got connected with the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine.
In Lisa’s Chicago neighborhood, support is never more than a few steps away. Her parents live across the street, her brother next door to them, and her sisters are all within a few miles.
“There are 12 of us that live about 100 feet from each other,” Lisa says. “There’s always someone around the house.”
That closeness extends to her “primary care team”—her daughters. Whether it is Kari helping with medicine and hair, or the twins managing the kitchen, the family has stepped up to support their mom. Even through the “bumps”—like the time Lisa accidentally set the oven on broil and her husband had to throw a burning pan out the door—they find reasons to laugh.
“You have to have humor, otherwise you go nuts,” says Lisa’s mom, Michele. “You have to be side-by-side with them, helping them however you can every step of the way.”
For Lisa’s daughters, these daily acts of service are about more than logistics—they are about preserving the essence of the woman they love. “I help her get ready for the day… help her feel put together and feel like herself,” says 14-year-old Kari. Even as they balance high school and busy sports schedules, the girls have found that this journey has strengthened their family bond. “It’s a really positive community,” adds Ashley. “It’s one thing that makes our family closer.”
Since connecting with the Les Turner ALS Foundation, Lisa has found a vital partner in her Support Services Coordinator, Easton Stevenson.
“She’s my right hand,” Lisa shares. “She asks me how I’m moving, how I’m breathing… she’s great at anticipating my next need.” Through grant programs, the Foundation has helped Lisa install a railing and remodel her bathroom to ensure she can stay in her home safely.
“Lisa meeting Easton… it’s really made this whole process just so much easier,” Michele adds. “Every time Lisa has a concern, she calls. They’ve really been teaching us all along.”
On Saturday, April 11, Lisa and her family will join us for the Hope Through Caring Gala at the Radisson Blu Aqua Hotel in Chicago. This evening is more than just a black-tie event; it is a celebration of the community that ensures no one has to navigate ALS alone.
By attending the Gala, you help provide the grants, the equipment, and the personalized support that allow families like the Kostrzeskis to focus on what matters most: each other.
“We walk to fight and live for another day,” Lisa says. “And support research so I can live and watch my kids grow up.”
We look forward to seeing you on Saturday, April 11 at the Radisson Blu Aqua Hotel!
