WESTCHESTER – Westchester resident Ryan Brubeck was diagnosed with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS), two years ago, and in the months since, the Brubeck family has leaned on the support offered by the Les Turner ALS Foundation, said Ryan's wife, Sherlyn.
The foundation will honor Ryan and 14 other individuals diagnosed with ALS at the annual Hope Through Caring Gala on Feb. 27 in Chicago. Two couples who have demonstrated a strong commitment to the foundation and have funded its work through generous donations also will be recognized at the event.
The foundation is a leader in research, education and patient care for ALS and serves almost 90 percent of people with ALS in the Chicago area, Executive Director Andrea Pauls Backman said. The organization has existed for nearly 40 years and includes a research and patient care center at Northwestern Medicine, she said.
Backman said Ryan, 39, has "been really a part of the foundation since his diagnosis."
"The way our support works is, in addition to funding research and having a clinic at Northwestern, we also have a team of professionals that lead support groups and go into people's homes and work with the ALS [patients] and their families," she said.
Sherlyn, 35, said she and her husband had no idea how much they would need the support of the foundation when they first met with its representatives.
"We obviously were shocked and overwhelmed, and they've guided us through this process in terms of anticipating whatever the next step is," she said. "They're there ready in terms of guiding us with home modifications, equipment, health care professionals – you name it – and they're guiding us every step of the way."
When Ryan was diagnosed in January 2014, Sherlyn said the couple had just found out they were six weeks pregnant with their first child and had recently celebrated their first wedding anniversary.
"An ALS diagnosis was obviously the last thing we thought was going to come up," she said.
Though its symptoms can be treated, there is currently no prevention or cure for the terminal neuromuscular disease. People with ALS gradually lose their ability to walk, speak, eat and breathe, though their cognitive abilities typically remain unaffected.
Backman said the foundation has seen individuals as young as 18 and as old as their 80s diagnosed with ALS.
A few months after receiving the diagnosis, the Brubecks moved from the loft they shared in Chicago's Bucktown neighborhood to a townhouse with a first-floor master bedroom in Westchester. Sherlyn said she wanted to be close to her office in Oak Brook so that she could return home during the day if needed to help Ryan and their 18-month-old son, Ryan Jr.
"We knew difficult things were coming and needed to make things as simple and convenient as possible so that's how Westchester came into play," she said.
Sherlyn said she prefers the suburbs, but her husband misses the city.
"When he was healthy and the weather was nice, he'd go out on his bike all day, ride to the lake and ride around the neighborhood," she said.
Ryan is now in a power wheelchair full time, and he is struggling with his speech, Sherlyn said, but he never complains.
"Things are getting very difficult, but the one thing with Ryan is he has such a positive attitude, and I'm so grateful for that," she said.
Backman said Ryan's story – a husband and new father in the prime of his life struck down suddenly by this devastating disease – is a powerful one.
She said Ryan and the ALS patients to be honored at the gala serve as a reminder for the other guests and clinicians in attendance that "they're the reason we are here, and that's why we honor them – we don't want to ever forget them."
The honor from the Les Turner ALS Foundation and anything else that brings awareness to this disease are what gives her husband hope, Sherlyn said.
She expressed a vast appreciation for the help the foundation has offered to her young family.
"This disease robs you of so much, and [the Les Turner ALS Foundation allows] us to still be a family and in our home and to keep life as normal as possible under the circumstances," Sherlyn said.