Through Sports and Spicy Peppers, New Canaan Family Leads the Way in ALS Research

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Right here in New Canaan, one family is helping to lead the way in the fight against ALS.

Meet the Haberstroh brothers, who lost their mother, Patty Haberstroh, two years ago to a seven-year battle with the progressive neurodegenerative disease. 

The brothers, in their own respective ways, have spearheaded innovative and ever-expanding initiatives to beat ALS.

A few months after their mother was first diagnosed, the Haberstrohs were inspired to start the “ALS Pepper Challenge” – a trend where individuals consume hot peppers on camera and convince three others to join in.

What began as a single video of the Haberstrohs consuming spicy peppers in their New Canaan kitchen soon exploded into a viral social media sensation. 

“It took off beyond our wildest dreams –  it went viral all over the world, including with celebrities and athletes. It was amazing to see how it took on a life of its own,” said one of the brothers, Steve Haberstroh. “We raised a million dollars from that effort – an effort that began in our local community. That propelled us –  we made a lot of connections in the ALS community after that.”

From that point, Steve and his brothers were motivated to expand their efforts.

“What started as a conversation with my older brother, Chuck, and a couple other people who’ve been impacted by this disease, eventually led to us to convince Major League Baseball (MLB) to have a league-wide annual ALS awareness Lou Gehrig Day across all of baseball where players wear patches on their jerseys,” Steve Haberstroh said.

Chuck is now the chair of that initiative.

Steve’s younger brother, Tom, though via a different sport, remains dedicated to the fight.

“My younger brother, Tom, who works in the basketball industry, started and heads up Hoops4ALS, where in college basketball each year, teams come out in t-shirts to raise awareness about the disease,” Steve Haberstroh said. “It began with Pitt playing Duke.”

As for Steve, he has just begun a new initiative – one that is close to home. 

Last month, Steve, and two other New Canaan residents who both lost loved ones to ALS, Mike Mastropaolo and Brian Schwartz, raised over $450,000 playing 100 holes of golf in a single day.

On Tuesday, June 17 at Keney Golf Course in Hartford, Steve Haberstroh, Mastrapaolo, Schwartz and 21 others participated in the challenge.

This summer marked the second year of Steve Haberstroh’s leadership in the fundraiser – which was created two years ago in Austin by Alex Litt and Cory Sullivan, who both lost their fathers to a battle with ALS.

Since then, with the help of Steve Haberstroh, the fundraiser has taken off. 

“The idea was to bring the fundraiser to Connecticut in order to coincide with a PGA Tour event, the Traveler’s Championship, that was happening the same week outside of Hartford,” he said. “The idea was to grow this event and expand into Connecticut with the hopes that one day the PGA Tour and a couple of players would come support the event.”

What initially began as a two person team grew to eight last year. 

This year, the team numbered 24.

Last year, the team played at Great River Golf Course in Milford, CT and raised  “close to three hundred thousand dollars,” Steve Haberstroh said

“We’d like to grow this even bigger,” Steve Haberstroh recalled Litt and Sullivan telling him. 

That’s where Mastropaolo and Schwartz came in.

“They asked me whether I knew anyone else like-minded who has been impacted by ALS and has a passion for golf that would like to get involved. I immediately thought of Mike and Brian — both New Canaanites and great people,” Steve Haberstroh said. 

This year, the 24 golfers were split into teams of two. The duos were tasked with conducting their own fundraising efforts.

“Each team did their own organic fundraising, within their local community, friends, and even their work network,” Steve Haberstroh said.

“My older brother, Chuck, ended up playing with a fellow Connecticut resident, Dan Orlovsky, a sports personality on ESPN, which helped bring the event lots of publicity,” he added.

The goal was for each team to raise $10,000 but most teams raised well over $20,000. 

The amount raised from the golfing alone marks only half of the total of $450,000, however. 

“The remaining amount can be attributed to corporate sponsorships and an auction of golf experiences,” he said.

The auction featured golf experiences at selective golf courses around the nation.

“People could bid money on being able to play at really great golf courses across the country and those experiences were donated by other people,” Steve Haberstroh said. “I contacted several people I know that belong to great golf courses who were willing to donate to the cause.”

The auction ran the same week as the golf event and closed a few days following June 17. 

Furthermore, the program hosted an additional elite auction for participants who donated more than $250 dollars. 

“If someone donated more than $250 dollars to the cause, we did a separate auction with really, really unbelievable golf courses that fetched a significant amount of money,” Steve Haberstroh said.

In sum, the total of $450,000 raised from this event came from three separate efforts. 

“It was principally three things, our own organic fundraising, corporate sponsors, and golf experiences,” Steve Haberstroh said. 

Their efforts and all fundraiser participants have brought the total amount raised to over $1 million since the initiative began years ago. 

In the coming years, Steve Haberstroh said he hopes to continue expanding the golf fundraiser across the country. 

“In the future, I think we will increase the event to 32 golfers and in five years, the plan is to have it all over the country,” he said. “We will likely have six to eight of these events happening at the same time across the nation.”

When reflecting on the fundraiser, Steve said it is “bittersweet.”

“I feel amazing to be able to turn something that is so awful for so many families into something that is positive,” he said. 

Steve Haberstroh added: “One of the challenges of ALS for the person battling the disease is that their brain remains perfectly intact but their muscles stop working. The brain communicates to the muscles but the muscles don’t receive that communication well, so eventually the whole body atrophies.”

“By the time my mother passed – and she fought for 7 years – she could only move her eyes,” he recalled. “She would communicate by typing on an iPad. Even typing a single sentence would take her over an hour.”

“For the people taking care of that person – usually family –  it’s basically 24/7 care and it can be emotionally and financially devastating,” he added.

“So my efforts are essentially two-fold: one is to raise money and awareness for cures, because the first and most famous documented person with ALS was Lou Gehrig and he died over 80 years ago facing the same prognosis as my mother –  that ALS would kill her just like it killed him,” he said. “That is unacceptable to us.”

“The second is because I know firsthand that for my mother, when she would see other people doing fun and exciting things to raise awareness and money toward beating this beast, it gave her something to feel hopeful about – it gave her something to be excited about.” he said. 

“For this community that is battling today and for those that will come in the future, we do these things to bring hope and to bring happiness –  to say ‘you’re not alone’.”

“My mother had a wonderful community and I have a wonderful community that rallies behind me, but a lot of people are fighting this disease in the middle of nowhere. If they’re on social media and they see these things, it shows them that they’re not alone, we are in this fight together,” he said. “I have pledged that I will never stop fighting.”

This summer marks the second anniversary of his mother’s passing. 

Steve Haberstroh said he hopes to continue honoring his mother’s legacy with his efforts. 

He recounts his mother saying, “We’re going to fight – not just for me but for others.”

“As kids, we took that as orders from mom,” he said. “And we’ve come up with some unique ways to do just that.”

“I think she’d be really proud,” he added. “She always supported me as a golfer, so I’m sure she’s up there smirking and smiling.”

To the New Canaan community, Steve Haberstroh said: “I want to say thank you –  thank you to the community, thank you to the publications like yourselves for covering this, because what my family and others firmly believe is that awareness leads to funding, funding leads to research, and research will lead to cures and treatments.”

“Of course, we want to raise money, but we also want to raise awareness. I hope I can inspire others to join this fight as well,” he said.

“I know of several families who keep a low profile in New Canaan, but who are directly impacted or currently battling this disease, and I want them to know that we’re still here with them. We’re fighting for them, and we’re not going to stop.”