I’ve spent a lot of time lately thinking about ALS.
Much of that has to do with the stories I’ve done on those in our community struggling with this fatal disease, including 18-year-old Josh Rogers from Aurora, one of the youngest in the state diagnosed with what is often referred to as Lou Gehrig’s disease.
Then, over the weekend I watched a compelling documentary called “So Much So Fast,” about 29-year-old Stephen Heywood, a young dad with ALS whose brothers began a research group to get the upper hand on this horrible disease before time ran out.
That same night I caught the latest news on Brian Schnurstein, who played baseball and football with my son in the late 1990s for Wheaton Warrenville High School, now a young father living in Michigan and diagnosed with ALS, also at the age of 29.
Brian is using his story whenever possible to bring awareness to this disease that attacks the nerve cells, leading to paralysis and death, usually within five years. So it didn’t really surprise me his family was among the thousands who took the Ice Bucket Challenge to raise awareness and money for ALS research.
By this point, you would have to be living under a rock not to have heard about this fundraiser that has become a viral sensation. All across America, everyday folks and celebrities like Bill Gates, Oprah and Lady Gaga are getting soaked by buckets of ice water poured over them to raise money for the ALS Association.
Locally, it’s trending big time, as well. Clayton Muhammad, communications director for the City of Aurora and our own local celeb, got doused with a cold pail while all decked out in one of his dashing suits. And on Tuesday evening, Mayor Tom Weisner planned to join the legions taking a hit of nice cold H2O.
This frigid stunt that’s grown so hot originally began as a way to garner donations for any charity. But it turned into an ALS phenomenon, and this campaign has, as of Tuesday, brought in about $23 million since the end of July for the ALS Association, compared to $1.9 million in that same time frame a year ago.
The original idea was to take the challenge or donate a $100 to the charity. These days, you are supposed to get soaked and donate $10.
Either way, the hoopla is as appreciated as it is unexpected.
A cure for this deadly disease is going to come from the science, as former IMSA principal Eric McLaren told me when we wrote stories about his battle with ALS. Dr. McLaren died in June, but his legacy lives on, in part, through a partnership IMSA formed with the nationally respected research group Project A.L.S.
Those affected by ALS are racing against a fast moving clock. And the science we need to beat it can be used to cure other neurodegenerative diseases, such as Parkinson’s and Alzheimer’s.
Instead of dousing myself with ice water and adding that video to the thousands of others now out there, I’d rather direct your attention to a video of Josh Rogers, leg braces and all, getting doused with a bucket of water. (mail.google.com/mail/ca/u/0/#inbox/147f029fb419a503.)
My challenge to the community: Get behind this young man as he faces a fight no one so young should ever have to face.
I featured the Aurora teen and his poor but tight-knit family earlier this month because a fundraiser is being held for Josh Sept. 6 at Luigi’s Pizza and Fun Center in Aurora. Another ALS family donated a hospital bed to the tall, lanky teen after the column ran. But Patti Stockwell, a volunteer with ALS of Greater Chicago Chapter, continues to make that drive from her home in Huntley to Aurora every weekend trying to drum up donations for the silent auction. Why? Because Josh’s needs are great.
“It’s been a struggle,” says Stockwell.
But she’s not giving up. After weeks of rejection from so many businesses, she ran into an angel in the form of Lisa Robbins, manager for Sports Clips in Montgomery, who donated over $900 worth of free haircuts.
“After hearing about Josh, how could anyone not want to help,” Robbins told me.
How indeed.Tags: Denise Crosby
Fundraiser for Joshua Rogers
When: 4:30 p.m. Sept. 6
Where: Luigi’s Pizza and Fun Center, 732 Prairie Street, Aurora
For more information, go to joshuarogersfundraiser.com; or call Patti Stockwell at 708-606-9229.
Donations can also be be made to the Joshua Rogers fund, at any TFC Bank (located inside Jewel food stores).