Started in the summer of 2014, the Ice Bucket Challenge was a global phenomenon that raised awareness and tens of millions of research dollars for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease.
This month marks the 10th anniversary of the challenge and the Les Turner ALS Foundation is celebrating milestones made over the last decade in the fight to end the devastating disease.
“The Ice Bucket Challenge, I actually did it with guys at the firehouse. We did it back when that was the thing and never thought it would affect my family and me,” said Bryan Szymczak, from Huntley.
A firefighter for 26 years, Szymczak had to retire early after he was diagnosed with ALS one year ago.
“Couldn't believe it, shock. Still can't wrap my head around it until, you know, but now it's time to do what I can for everybody else who is going to have this disease,” Szymczak said.
Szymczak, his wife and their three daughters attended a “Chipping Away at ALS” celebration at the Robert H. Lurie Medical Research Center of Northwestern University Thursday, using ice picks to chip away at a four-foot long ice sculpture spelling out the letters “ALS.”
Dr. Sedra Ajroud-Driss, director of the Lois Insolia ALS Clinic at Northwestern, also spoke at the event, encouraged by advancements in patient care.
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“First of all, the care we provide the patients, we can treat any symptom of the disease. We do know that patients progress slower now, and their quality of life is much better than let's say 10 years ago,” Ajroud-Driss said.
Tim Rooney’s family has suffered profound loss from ALS, which claimed the lives of his mother, aunt and brother. Rooney says another of his brothers was recently diagnosed.
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The Beverly native wore Steve McMichael’s Bears jersey to the celebration, acknowledging the soon to be Hall of Famer’s ongoing battle with ALS.
Despite his grief, Rooney said he remains hopeful a cure is on the horizon.
“Through all the transformation with drug therapies and supercomputers and everything like that, we’re really hoping that a cure can be found in a shorter time than we might have thought, just a decade ago,” Rooney said.
Until that day, the goal is to slow the progression of the disease that affects a person’s ability to walk, talk, breathe and swallow.
Szymczak is taking FDA approved medications, developed with research dollars collected through the ice bucket challenge. He is also participating in a clinical trial, those efforts helping him keep up with his active family. “I'm a year into it. I'm still doing everything I was doing before, just some more right arm weakness. But other than that, I'm still, I'm still doing good,” Szymczak said.
