These days the Internet can feel like a fraught and tenuous place. But when bad news came to Tom Haberstroh’s family, he turned to basketball Twitter for help and was rewarded in a way he never expected.
In October his mother, Patty, was diagnosed with Amyotrophic Lateral Sclerosis — better known as ALS or Lou Gehrig’s Disease. The degenerative disease is ultimately deadly, with no currently known cure. And so the family decided to raise funds to help study ALS and they brainstormed for ways to raise awareness and, in turn, money for the cause.
With the help of a little YouTube inspiration, the NBA writer and his family came up with a test of sorts over the Thanksgiving holiday: the ALS Pepper Challenge. The idea was a simple reimagining of the Ice Bucket Challenge: eat a hot pepper on camera, nominate three others to do the same, then encourage them to share the video and donate to the cause.
“We were like ‘What was it about the Ice Bucket Challenge that was so entertaining and had this gravity around it?’” Haberstroh told Uproxx. “Well, it was this human experience of enduring a cold thing, right?”
The family decided to do the opposite, choosing a hot thing in the vein of the YouTube series Hot Ones, where host Sean Evans interviews people while they eat increasingly hotter chicken wings. Patty in particular was swayed by an episode where Gabrielle Union ate hot wings, and the challenge was on. The Haberstrohs did the first challenge over Thanksgiving, each of them eating a habanero or jalapeno pepper with milk nearby to get them relief from the heat. Tom and his siblings posted the video on social media and asked for donations, and family, friends and co-workers soon followed with their own videos and money.
But Tom Haberstroh’s co-workers are sports personalities with many that work for large media corporations and NBA teams. With more than 153,000 followers on Twitter, his social reach helped their campaign gain steam. And much like in 2014 when the challenge was ice and water in buckets, the #ALSPepperChallenge caught fire in a big way. Soon Miami Heat coach Erik Spoelstra was eating peppers in his office in Miami, worriedly texting Tom about whether the video was good enough.
Jim Rome took the challenge and Haberstroh said he also donated $1,000 after the fact, something that shocked him and his family.
“Jim Rome is someone I grew up listening to on the air,” said Haberstroh, who had appeared on the show but had never met him in person. “And he’s able to shell out four figures for this cause that happened to my mother? It’s remarkable.”
Rome nomimated Nancy O’Dell to do it as well. She then got other celebrities involved, like Sharon Osbourne, who did it on The Talk. Word soon spread among other celebrities and sports, and before anyone knew it Shaq and Charles Barkley were doing the challenge on air on Inside The NBA.
Shaq’s attempt at the challenge is an example of how the campaign works as an infection vector. Shaq took the One Chip Challenge with hilarious results earlier in the season, so this was a bit of a chance at redemption for him. But TNT airing the challenge and putting it online was a huge boost in visibility, and the videos from all over the sports and entertainment world soon followed.
“It’s so far gone beyond our wildest dreams,” Haberstroh said. “We never thought it would catch fire this quickly.”
The chain of people taking the challenge snakes its way through the NBA community and well beyond. Caron Butler did it after Grant Hill nominated him. Ben Stiller took the challenge after he was nominated by his daughter. He, in turn, nominated Aaron Rodgers and Dirk Nowitzki to take the challenge next. The Tennessee Titans were thrilled quarterback Marcus Mariota did the challenge and called out offensive lineman Taylor Lewan when Mariota nominated him to take the challenge as well.
But what is it about watching people suffer online that is so convincing as a fundraising tool? For Haberstroh, there’s something “humanizing” about watching someone eat a hot pepper.
“Instagram is kind of this fantasy world where you put filters on your photo and take 10 pictures and pick the best one,” he said. “This pepper challenge, you don’t get that opportunity. You are real. You are raw. You are suffering. You are human, it’s an experience.”
Haberstroh said you get “a piece of their humanity” when someone take the challenge on camera. And as goofy as eating a hot pepper on social media can seem, the money donated going to a very serious organization. ALS TDI is a non-profit independent biotech committed to finding a treatment and cure for ALS.
Their motto is that Lou Gehrig’s Disease is not an incurable one, but an “underfunded” one. It’s an essential viewpoint for the Haberstrohs and the hundreds of thousands of families hoping for a cure before it’s too late.
“You don’t walk in the door at ALS TDI unless you believe that this disease can be beaten,” said Rob Goldstein, Chief Marketing Officer at ALS TDI. “Everybody here does believe that the treatment that’s going to provide relief to people is sitting on a bench in one of our labs or a bench in another lab somewhere around the world.”
Money, he said, is all that stands in the way of turning research into reality. And because they’re not teaching students or diagnosing ALS in a hospital, they’re committed to spending every dollar they raise on research.
“It’s not like there’s a grad student back here touching a mouse for a first time,” Goldstein said. “These are experienced drug developers.”
The Pepper Challenge is just one countless fundraisers families of ALS patients have started, but the success the Haberstrohs have found hasn’t gone unnoticed. The site’s homepage shows off the Hot Pepper Challenge and a video highlighting some of the most notable challenge participants while imploring others to take up the cause.
“I don’t see this as an ALS TDI campaign,” Goldstein said. “This is a family reaching out to a network and doing something amazing and we’re just tremendously grateful to be the beneficiaries of it.”
It’s not the first time the family has raised money well past their initial goal, either. Tom’s twin sister, Kim, was diagnosed with cancer in 2015. Tom ran a half marathon on their birthday to raise $10,000 for the Leukemia and Lymphoma Society. They raised more than $35,000.
The drive to help those in need seems to be hereditary. Patty, a social worker in Westport, Connecticut, has spent her life helping others in town. Tom described campaigns she’s spearheaded to get backpacks for underprivileged students each fall and using her job to help needy families at Christmastime. He talked about the “harrowing experiences” he’s seen his mother help others through and said he’s determined to help her during the fight of her life.
“My mom been my rock throughout my life. She’s such a selfless person. I think people talk about how they put others in front of them, and she does it. She lives it. She works it. She provides little miracles for families that need it,” Tom said. “Now it’s time to pay it back. Pay it forward. And we’re thanking her.”
For Patty and the family, the reaction from the network her children have helped reach has been overwhelming.
“It’s very touching. It causes me to forget why we’re doing this, and that’s a good thing. I’m still mobile. I can walk with a limp. So hopefully it’s going to progress slowly, you can never tell,” she said. “I’m just thankful for every day. It’s trite. It’s average. But when you have something like this you really start to do that.”
And despite the initial skepticism about the awareness-raising the Ice Bucket Challenge did, it also worked: an estimated $115 million was raised for just the ALS Association alone in 2014. And subsequent research has led to some significant breakthroughs.
The Habestrohs had much smaller fundraising goals, but they smashed $50,000 in less than a month. And the challenge is spreading more and more each day. Garth Brooks had taken part the day before I talked to Goldstein by phone. Days later, Haberstroh gleefully retweeted Jake Tapper doing it with Wolf Blitzer. The NBA community helped the ALS Pepper Challenge get off the ground, but Habestroh said it’s often the complete strangers helping out that’s brought the scope of its reach into focus.
“It’s really enriched my belief in humanity, honestly,” he said. “I have very frequent moments where I just break down and cry, not because I’m sad but because I’m happy. Because I feel very lucky and fortunate to be surrounded by people willing to contribute. Even people I haven’t met.”
And it’s truly spread all around the world. Liverpool’s Simon Mignolet did the challenge in February after a Belgian stand-up comic challenged him. The path of discarded hot pepper stems has spread through all kinds of unexpected channels, linking friends, teammates and — more importantly — caring people to the cause.
“People are amazing. Humans are good to each other,” Goldstein said. “If you give someone an opportunity to help a stranger, more often than not they’ll take it every time.”
Patty started treatment for ALS on February 12. Tom wrote on Facebook about the treatment: Radacava, the first FDA-approved drug to help treat ALS in 22 years. But the best case scenario with Radacava is slowing progression of the disease 33 percent. The family has done so much so fast, but nothing can happen quickly enough for them.
And despite the moments of joy, the reality and urgency of the matter is always there. I asked Patty if Gabrielle Union’s husband, Dwyane Wade, would be her dream ALS Hot Pepper Challenge participant. She said it’s actually LeBron James, who she met briefly a few years ago. She admired his “his good work in the community” but in the same breath, however, was reminded of just how serious her situation is.
“For somebody like me, it’s a race against time,” she said, noting the months and sometimes years it takes for a trial drug to be FDA approved for use on humans. “All of the awareness raising is terrific and that blows me away but so, too, do we need the money. So it’s a lot of emotion swings during this period.”
On Facebook, Tom wrote about AT-1501 antibody, a promising treatment candidate that he said is “literally on ice in a freezer” at ALS TDI headquarters in Cambridge.
“It’s just sitting there, the most exciting drug of over 300 tested at the ALS TDI lab,” he wrote. “It will sit there until $30 million is raised so it can go into Phase 2 clinical trial. It needs funds to get to humans.”
Their new goal, $1 million, is still a small percentage of the money needed to take AT-1501 to the next step. That’s why he also included the Stonecutter’s Credo in the post, a favorite quote of San Antonio Spurs coach Gregg Popovich.
Here’s what the Stonecutter Credo text reads:
“When nothing seems to help, I go look at a stonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that blow that did it, but all that had gone before.”
We’re pounding the rock.
A day after Tom’s update on Facebook, an anonymous $250,000 donation came in. More videos appeared across social media, and the campaign sits just shy of a half million dollars. The attention and yes, the awareness, has helped. Maybe this story will, too.
The determination and desperation the Haberstrohs have is palpable, but there are also moments of reflection. For Patty, seeing all the good her children have done has been a “proud parent moment times 1,000.”
“It blows me away,” she said. “I always thought I had great kids, but boy do I think I have great kids now. They’ve been putting this, frankly, ahead of work in many cases.”
Patty said she wouldn’t wish ALS on anyone, but watching her husband and children rally around the cause of curing ALS over the last few months has deepened her love and appreciation of her family and friends.
“If you look for the good in everything,” she said, “That’s the good here.”
The good has been there, and it’s still coming with the bad each day. The Haberstrohs have moved the goalposts on success for the ALS Pepper Challenge, but curing ALS in Patty’s lifetime remains the ultimate goal. After the last few weeks a million dollars raised suddenly seems possible. LeBron, Wade, and hopefully a cure don’t seem so far off, either.