Julie Stowell embraces Anita Forte at the 2022 ALS Walk for Life

Faces of ALS: Julie Stowell, from the heart

Mark HeidenFaces of ALS, Foundation Blog, Home Page

She’s one of the people you see at the finish line of the ALS Walk for Life, wearing a sparkly silver-and-blue tutu as she cheers on the finishers. But watch Julie Stowell for a minute and you’ll see her slip off to the side, cheek-to-cheek or forehead-to-forehead with someone, engaged in a connection whose depth is beyond words.

“Whenever I could not express myself, she understood,” says David Cozzolino, who is living with ALS. “Her sincere empathy, compassion and kindness always made me feel like I was the only one in the world with a problem.”

Julie Stowell, RN is retiring from the Les Turner ALS Foundation in July, after nine years as an ALS support services coordinator. Talking to the people living with ALS and the families she cared for provides a window into the love and comfort that donors make possible – and how much that support means to them.

“At the beginning of the journey, as my wife Lynn and I wondered what lay ahead, Julie was a comforting voice,” says Matt Creen, who is also living with ALS. “She helped us in so many ways, from advice on how to approach new challenges to calling vendors or doctors to make sure it came to fruition, and always with a positive attitude. Julie has made the ALS experience so much more livable for my family, and that is why we truly love her.”

“I have a tough time finding the words to convey enough appreciation,” agrees David. “My spouse and I feel truly fortunate to have had her as our support services coordinator.”

Nursing was a second career for Julie; though she’d wanted to be a nurse since she was in her twenties, frequent moves kept her from getting a nursing degree until later in life. She started as a nurse in an intensive care unit (ICU), but it soon became clear there was a difference between her and her colleagues.

“The ICU nurses were so professional, but their focus was on patients who were not awake,” remembers Julie. “I enjoyed moving around and talking to the other patients. But I wasn’t able to follow them out to the floor, so I never knew what happened with them.”

Through a referral, Julie moved to St. Thomas Hospice in Hinsdale. She asked to be assigned to people with ALS. Her father had died of ALS in 1992; she appreciated the fact that ALS patients had complex needs, and she found purpose in taking care of them, to their final moments.

Fourteen years later, when a position opened with the Les Turner ALS Foundation, Julie was encouraged to apply by Ileane Mindel, RN, a longtime support services coordinator and support group facilitator. Ileane became a valuable friend and mentor for her. She’s also grateful for Cara Gallagher, MA, LCPC, the Foundation’s current manager of support services.

“Julie becomes a part of everyone’s family,” says Cara. “She’s the kind of person whose energy and enthusiasm are contagious, with the ability to make you feel like life’s going to be okay, even at the worst of times. There is nothing she does that isn’t done from her heart.”

Julie Stowell and Phil Schwarz at the 2022 ALS Walk for Life

Julie Stowell and Phil Schwarz at the 2022 ALS Walk for Life

The people we lose to ALS are never forgotten. Their stories live on through those who loved them, and Julie says that she feels blessed to have been with them. One who came readily to mind for Julie was Paul Milano, who passed away in 2022.

“Paul lost his wife after an 11-year battle with breast cancer, and he was diagnosed with ALS in the last years of her battle,” says Julie. “He had three daughters, and he wanted to maintain his independence and live the best life he could. And he was so funny. He always made people laugh at our support group meetings. Everybody remembers Paul.

“Paul wanted to hold on until the anniversary of his wife’s death, but unfortunately it became impossible to wait that long. I was able to be by his side when he passed.

“Afterward, I went to a restaurant with Cara and Audrey, his respiratory therapist at the hospice. We told our server we were there to celebrate someone who had passed away from ALS. She was a complete stranger, but she knew who we were talking about right away, and she was heartbroken to know he was gone. He brought joy to so many people.”

For the entire support services team at the Les Turner ALS Foundation, people with ALS come first.

“We all know, it’s not about us,” says Julie. “It’s about the people we serve and how we can make this as good as it can be for them, for as long as they want it to be. It’s about how we all work together to take care of this person.”

If you value the love, comfort, and support for people with ALS and their families that Julie and our support services team provide, please make a donation.

All gifts made in Julie’s honor will go directly to ALS support services. Your donation will be felt – and deeply appreciated – by people living with ALS and their families, as we continue Julie’s work for many years to come.

Top: Julie Stowell, RN with Anita Forte at the 2022 ALS Walk for Life