Like most people, Tom Haberstroh didn’t know a lot about ALS when he did the Ice Bucket Challenge in 2014.
His family, however, is the reason you might have seen celebrities like Jennifer Garner, Shaquille O’Neal, Garth Brooks and Jimmy Kimmel chomping down hot peppers on TV and over social media in the name of ALS research recently.
Haberstroh and his three siblings started the ALS Pepper Challenge on Christmas Day 2017, months after their mother, Patty, was diagnosed with ALS. The Haberstrohs’ effort is like the Ice Bucket Challenge, but with the heat turned way up, said Haberstroh, a 32-year-old NBA writer living in Charlotte.
Thanks to social media, the challenge has gone viral in its first month, and has raised over $87,000 so far. Hundreds of people have done it.
“I’m an analytics guy,” said Haberstroh, a longtime UNC basketball fan who would would crank out stats on players like Hubert Davis and Vince Carter as a kid. “I know the numbers on ALS, and this is an uphill battle. As it stands now, unless we get funds, it’s a Hail Mary to find a cure.”
Haberstroh was at a lake house in Tennessee in the summer of 2014 when he was nominated by a friend and had his wife, Allison, take a video of him getting drenched with ice water. He donated $100, and thought that was it.
Only about 30,000 people live with the disease nationwide, so Haberstroh never thought it would affect his family. But last October, Haberstroh’s mother was diagnosed with amyotrophic lateral sclerosis.
Also known as Lou Gehrig’s disease, ALS is a devastating muscle-deteriorating disease that has neither a cure nor a treatment.
Before her diagnosis, Patty Haberstroh, 68, knew little about ALS. “I thought it was the worst disease you could possibly have because your brain remains in tact while body fails you,” she said on a trip to Charlotte from her home in from Westport, Conn., this week for the first birthday celebration of Tom’s daughter, Madelyn.
Typically after a diagnosis, an ALS patient dies within two-to-five years. Only 10 percent of those living with ALS will live beyond 10 years.
ALS received global attention from the Ice Bucket Challenge, but the Haberstrohs have found that there’s actually a dearth of information about the disease.
So as soon as their mom was diagnosed, the four siblings started scheming up ways to not only shed light on the disease again, but also figure out ways to inject funding into research and treatment.
The Ice Bucket Challenge raised $115 million for the ALS Association, and most of the funds went toward research. The association said in 2016 that thanks in part to the new funds, its scientists discovered a gene tied to ALS, according to the New York Times.
‘They did it on the air’
Tom Haberstroh and his brother got the idea for their ALS Pepper Challenge from the web series Hot Ones, during which host Sean Evans interviews celebrity guests like Gabrielle Union and Seth Rogen while eating platters of increasingly spicy chicken wings.
Here’s how the challenge works: You don’t have to be nominated, Haberstroh said, but that’s the way many people end up doing it. You have to tape yourself eating a hot pepper – popular options have been jalapeño, serrano or habanero – nominate three people to participate, then post the video to social media using the hashtag #ALSPepperChallenge within 48 hours.
If you’re nominated and don’t eat the pepper, you donate $100 (or whatever you can), but the Haberstrohs encourage donating at least a little something to ALS TDI regardless. People can go to the Haberstrohs’ pepper challenge website to donate.
Twitter and Facebook have been the most effective tools in spreading the word about the challenge so far said Haberstroh, who has over 151,000 followers on Twitter.
The challenge has spread beyond the U.S. and to places like Brazil, Singapore, Australia and England. On Thursday, the Haberstrohs raised their fundraising goal to $1 million.
“There’s something about eating a hot pepper that is so human,” Haberstroh said. “Part of the appeal of the Ice Bucket Challenge is that you can’t fake getting dunked with a giant bucket of ice water.”
Haberstroh said it hit him that the challenge was starting to catch on when his former ESPN colleagues started doing it live on TV.
“I have friends who are gracious enough to do this for me. And they did it on air!” he said.
Haberstroh, a recent Charlotte transplant, has plenty of North Carolina ties – he met his wife at Wake Forest, his grandparents retired in Charlotte, he and his brothers attended UNC basketball camp as kids. So he’s hoping the challenge catches on here soon.
“Coach Rivera, you’re up next. I’m gonna nominate you for the #ALSPepperChallenge,” Haberstroh said of the Carolina Panthers head coach.
Ron Rivera, after all has ties to ALS: His ex-University of California teammate/roommate Paul Najarian died of ALS in June 2014. In August of that year, Rivera did the Ice Bucket Challenge in his honor.
On Christmas Day, Haberstrohs posted a video of the whole family cheering, “We love you mom!” before chomping down on habaneros and jalapeños.
“It’s not an incurable disease. It’s underfunded,” Tom Haberstroh said in the video, echoing the motto of the Cambridge, Mass.-based ALS Therapy Development Institute, the nonprofit focused on ALS research that the Pepper Challenge will benefit.
Rob Goldstein of ALS TDI said the institute is grateful for the Haberstrohs’ efforts, and that the funds will go toward developing ALS treatments.
“This is going to raise a lot of awareness for ALS, and that can’t be discounted either,” Goldstein added.
The ALS TDI said it received $3.5 million from the Ice Bucket Challenge. Haberstroh said he hopes that the donations from his family’s challenge will fund research and therapy, and lengthen lifespans.
“For my mom, if we can just stop the progression, that’d be great. She doesn’t need to walk to be happy, she doesn’t need to eat to be happy. She just needs to slow this progression down. For a lot of people with ALS, that’s a huge thing,” Haberstroh said.
“It is a devastating disease and it has a sports tie, so we’re hoping that it catches fire.”