Tim Rooney has many reasons to be pessimistic.
The Beverly resident has watched family members be either diagnosed or die from ALS — Amyotrophic Lateral Sclerosis — since the 1980s, beginning with his aunt, Agnes McCoy, of Joliet.
His mother, Mary Rooney, also died of ALS in the summer of 2000. His brother, John Flynn Rooney, died in 2018. Another brother, Edmund, has one of the identified genes that causes ALS. Tim does not discuss publicly his own health status.
But with all of that heartbreak that ALS has caused — plus leukemia taking away his wife, Judge Jean Prendergast Rooney — Tim’s outlook on life is remarkably optimistic.
“I rely on my faith to sustain me,” he said. “Every day is a gift. I don’t dwell on the past too much and I try not to be concerned about the future too much.”
But there is one phase of the future he is concerned about, and it’s a possible cure for ALS.
Rooney was a guest speaker at the Chipping Away at ALS event July 25 at the Robert H. Lurie Medical Research Center of Northwestern University in Chicago.
He wore a Steve McMichael jersey at the Les Turner ALS Foundation-sponsored event. McMichael has ALS and was enshrined in the Pro Football Hall of Fame Saturday.
ALS is a disease known for affecting a person’s ability to walk, talk, swallow and breathe. It grows more severe over time, eventually becoming terminal, according to the ALS Foundation.
Ten years ago, there was an Ice Bucket Challenge in which more than $200 million was raised worldwide for research to try to find a cure for ALS. While a cure has not been found, Tim Rooney said advances in the last decade give him optimism.
“It will never be enough money until there is a cure, but it has made profound changes in the last decade,” he said. “The changes have come through research, through studies and through drug therapies.”
“I believe that hopefully in my children’s lifetime, there will be a cure that is found. It’s questionable whether it’s in my lifetime.”
Tim said with the age of the super computers, how fast things have progressed with drugs and with the understanding of the illness, there is a chance “we might have an answer or a possible cure sooner than what might have been expected 10 years ago.”
Chipping Away at ALS was an event in which participants such as Rooney chipped away at an ice sculpture, but there will be chipping of a different kind coming up to help the ALS Foundation.
The 11th Matt Creen Golf Invitational is scheduled for Aug. 8 at Odyssey Country Club in Tinley Park. Creen is a relative of the Rooney family and living with ALS. The golf outing has raised more than $775,00 over the years, providing support for those living with ALS and their families.
Tim Rooney admits that 10 years ago, he only participated in the Ice Bucker Challenge one time. But over the years he has raised money and awareness through various events including a Tri-State Trek of riding his bicycle 200 miles over two days.
Dr. John Coleman, a board member for the Les Turner ALS Foundation, said while the millions of dollars funneling in to try to find a cure is important, so is the awareness of ALS and he lauds Tim Rooney and his family for helping raise that awareness.
“One of the most troubling parts about ALS is that there are not a lot of people who are aware of it,” he said. “Because ALS is considered a rare disease, and not many people know someone who is affected by it, raising awareness is one of the biggest things that the Rooney family has done.”
Coleman said the number of people in the Rooney family affected by ALS is rare because the disease itself is “sporadic.”
But Coleman said the Rooney family is championing the cause and offering hope.
“Giving hope and having hope and believing that there is a cure out there is important,” Coleman said. “Look at all of the advances in technology and science and medicine and all of that — it’s just a matter of time before ALS gets a cure.”
Jeff Vorva is a freelance reporter for the Daily Southtown.