Locals lead fight for MLB Lou Gehrig Day
The efforts of a Connecticut family are coming to fruition as Major League Baseball readies to host its inaugural Lou Gehrig Day this year on June 2, as each of the league’s franchises will have its players don the No. 4 jersey and raise awareness for ALS research.
This is the culmination of years of work from various groups and communities who have either been afflicted by the neurodegenerative disease or have had loved ones suffer. For New Canaan resident and Westport native Steve Haberstroh, though, this journey began four years ago.
“My mother was diagnosed with ALS in 2017,” he said. “She saw a bunch of specialists. At some point, she started to believe that this seems to be something more serious. After 10 months worth of exams, she was formally diagnosed.”
Haberstroh is one of four siblings. Once his mother, Patty, was diagnosed with what is commonly known as Lou Gehrig’s disease, she made sure her children knew what her plan was.
“She first said ‘I love you,’ and that we were going to fight this, all of us,” Steve said. “And not just for her, she said, but for everyone that comes after her.”
Steve and his siblings, Chuck, Kim and Tom, set off on a mission to bring awareness to as many locals as they could. Tom, who was an employee of ESPN at the time, came to his brothers with an idea to raise awareness in the form of a challenge, much like the ALS Ice Bucket Challenge of 2014.
“He said, ‘Let’s have people eat hot peppers, film themselves, get their reaction and challenge other people to do the same,’ ” Steve said of Tom’s proposal. “We kind of rolled our eyes at first and laughed, but then thought ... let’s give it a shot.”
On Christmas Eve of 2017, the Haberstroh family recorded themselves eating hot peppers and challenged their friends and neighbors to do the same. Soon, the ALS Pepper Challenge took off.
Soon, famous athletes such as Shaquille O’Neal and pop singer Kelly Clarkson had taken the challenge. That helped raise over $700,000 to the team at the ALS Therapy Development Institute, a nonprofit based out of Massachusetts that the family had been working with.
“With that came awareness, came dollars and, with dollars, we were able to help push some drugs into clinical trials,” Haberstroh said. “That really gave us more drive to keep going because it went viral, and news channels and athletes were taking part in this. It also introduced us to other people who have been fighting this for years.”
One of those people it
“My mother was diagnosed with ALS in 2017. She saw a bunch of specialists. At some point, she started to believe that this seems to be something more serious. After 10 months worth of exams, she was formally diagnosed.”
Steve Haberstroh
introduced Haberstroh to was Brian Wallach.
Wallach, 37, is a Chicago native who was diagnosed with ALS and part of former President Barack Obama’s first administration.
“He asked us to coach his community outreach community program, and we just asked how we could help,” Haberstroh said. “Slowly but surely, that committee grew.”
Steve said that the main issue he saw in the fight to end ALS was a siloed approach in the community. He said his family and Wallach sought to connect with various programs that were doing great work, albeit in a fragmented manner.
Then, in June 2019, Haberstroh was contacted by one of the committee members on Wallach’s squad — Nashville native and songwriter Bryan Galentine, who battled ALS and has since died — who asked if he could ask the MLB to honor Gehrig.
Haberstroh was excited by the prospect and the team went to work. One of the first roadblocks was the pitch to the MLB and the method of approaching it.
“We needed to get every team on board and then go to the Commissioner’s Office, so we started getting to work,” Steve said. “Within six months, we had gotten seven teams on board, and we were very happy with that, but the process stalled.”
Then, committee member Adam Wilson emailed Derrick Hall, the president of the Arizona Diamondbacks, who said he’d do “whatever it would take” to get the job done, as his grandfather passed from the disease as well.
Soon, Red Sox President Sam Kennedy was on board, then Randy Levine of the New York Yankees. Ultimately, all 30 teams had signed on, and the Commissioner’s Office subsequently decided to move forward with the proposal.
The MLB is putting together plans to raise awareness for ALS across the league on June 2, which is the day Gehrig died.
“This will change everything,” Haberstroh said. “Awareness will lead to funding, funding will lead to research and research will lead to a cure. That is what we are all doing this for.”
As for the reason the Haberstrohs started this journey, Steve described his mother’s reaction, who is now fully paralyzed and is in a powerized wheelchair.
“She can move her eyes and that is it. The wheelchair she is in, it connects to the arm of the chair which is connected to a screen, where she can type using just her eyes,” Haberstroh said. “That morning, when the MLB decided to go public with this, she sent an email to me saying ‘You did it, I’m so proud of you.’ ”