It’s been a minute — OK, a decade — since millions of people threw buckets of ice over each other’s heads to raise awareness and funds for then-mysterious Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s disease.
The phenomenal social media campaign raised $115 million for ALS research and care, according to als.org, while increasing global awareness of the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
A lot has happened since then. Two new treatments have been approved by the FDA and the number of multidisciplinary clinics treating the disease has more than doubled across the United States.
But the disease continues. There still is no cure. The path to diagnosis has become less complicated, but ALS still robs patients of the ability to walk, talk and eventually breathe.
No one knows the bittersweet mélange of hope and heartbreak that ALS can bring better than Sarah Rooney Chandler and her family.
The Naperville resident lost her grandmother, an uncle and two great aunts to a genetic form of ALS. Her father and another uncle on her mother’s side, Matt Creen, are currently battling the disease.
“We’re the only family, I believe, in the United States to have (the disease)” diagnosed on both sides of the family, Rooney Chandler said.
“Both of my parents have a brother diagnosed within the same year with the same disease. It’s remarkable and devastating,” she said.
“But both the Creen and Rooney families have chosen to rally around hope,” she said. “We’ve chosen to live life with joy and love, and not dwell in this horrible disease. This is not the end of the road.”
She attributes her family’s grace and positivity to their strong Catholic faith.
Her uncle, John Rooney, who passed away in 2016, grew up in Chicago’s Beverly neighborhood and was a huge fan of the White Sox and the South Side Irish Parade, she said.
“He really enjoyed life up until the day he passed away,” she said.
More than 12 years into his diagnosis, Creen remains a fan of live music and golf. His annual golf outing raises thousands of dollars for ALS research.
“He has an amazing sense of humor. He jokes all the time,” Rooney Chandler said.
Both Rooney Chandler and Creen serve on the Les Turner ALS Foundation’s support services committee.
“We’re here to help other patients and other families however we can,” she said.
The foundation was started in 1977 by Bonnie and Harvey Gaffen, Turner’s sister and brother-in-law. The Highland Park couple are now in their 80s and continue the mission.
Rooney Chandler said she has been volunteering for the organization since she was a seventh-grader in 2003.
“My whole family would participate in tag days each May. It was a day I always looked forward to,” she said.
A host of events are listed on the foundation’s website, lesturnerals.org, including the upcoming All in For ALS Casino Night, sponsored by the Young Professionals Club, being held Nov. 15 at the East Bank Club in Chicago.
Both the Rooney and Creen families also participate in the annual ALS Les Turner Walk for Life each September, she said.
At this year’s event, Pope Leo XIV recorded a video message (lesturnerals.org/remarks-by-pope-leo-xiv-at-the-2025-als-walk-for-life-video-and-transcript/) on behalf of one of the pope’s fellow Augustinian priests from Chicago, the Rev. Jim Halstead, who has ALS.
That message, Rooney Chandler said, “was very powerful” and resonated with many of the walk’s participants.
It “touches each part of the struggle. He commends doctors, nurses, occupational therapists, social workers, family and friends, and the devotion of caregivers, which I’ve seen first-hand,” she said.
Coming from a former fellow suburban Chicagoan and a White Sox fan, the pope’s words, she said, hit close to home while having a worldwide impact. He recognized the struggle, which can afflict all races and creeds, and “he encouraged everyone with ALS and other motor neuron diseases, to keep the faith and work toward a cure,” she said.
The Ice Bucket Challenge launched an awareness campaign that brought progress and hope, she said, but there still is much work to be done.
Meanwhile, she added, “We want people to know they are not alone, that this community is welcoming to all.
“Once you’re in this club that nobody wants to be in, you are so loved,” she said. “And love conquers all. Even in death, hope and love continue.”
Donna Vickroy is an award-winning reporter, editor and columnist who worked for the Daily Southtown for 38 years. She can be reached at donnavickroy4@gmail.com.
