Claire Schulz Bergman
On November 3rd, 2024, two people living with ALS, Claire Schulz Bergman and Andrea Lytle Peet, will participate in the TCS New York City Marathon as part of Team ALS TDI, an official Charity Partner of the marathon. With the race just over a week away, Claire joined us to talk about what it takes – and what it means – to run a marathon while living with the ALS.
In 2020, the Iron Man Triathlon Claire Schulz Bergman had signed up for to celebrate her 50th birthday was canceled. It was a disappointment, but she was determined to keep training and participate in the rescheduled event in 2021. However, it soon became apparent something wasn’t right. Despite training hard for over two years, her pace kept getting slower and slower. Swimming was becoming especially difficult as her arms became progressively weaker.
The reason behind this became apparent in November of 2022 when, after a long process of elimination, Claire was diagnosed with ALS. Still, despite this devastating news, she was determined to keep pursuing running and cycling for as long as she could. The following summer, she participated in a 350-mile charity bike ride. This year, on Sunday, November 3rd, Claire will run the TCS New York City Marathon to support ALS research as a member of Team ALS TDI.
“I just love the feeling of training for something and accomplishing something,” says Claire, “This marathon is like one last chance to do something that I really love. It's been difficult trying to prepare for it in a way that I've never done before. My legs are still working well, pretty much. So, I'm still able to run and bike even though I don't swim anymore.”
Because of her limited arm strength, Claire has had to find creative ways to adapt her running technique. For a time, she ran with her hands in her pockets. Then, she tried stabilizing herself with a running stroller filled with 20-pound weights. Finally, she found an all-terrain walker that suited her purpose.
“I can rest my arms on the sides of the walker, and then I run for a bit, walk for a bit, and run for a bit,” she says. “I'm running much slower than I ever have, but I'm being much kinder to myself about that. I’ve realized that there's no going for time here. In New York, I would love to finish, but if I don't finish, I'm going to do what I can.”
On the day of the race, Claire will not be the only person pursuing the incredible accomplishment of participating in a marathon while living with ALS. Also representing Team ALS TDI will be Andrea Lytle Peet. This will be far from Andrea’s first marathon with ALS – she famously completed 50 marathons, one in each US state, following her diagnosis in 2014. Her story has been shared worldwide through a documentary about her efforts, Go on Be Brave, and a memoir, Hope Fights Back. Throughout her journey, she also raised essential funds for ALS research through Team Drea Foundation.
Andrea Lytle Peet
The marathon will be the first time these two athletes with ALS have met in person, but Claire says she’s connected online with Andrea before – and that her encouragement has been helpful as she’s taken on the challenge of continuing to pursue her athletic goals.
“Before I was diagnosed with ALS, they thought I had multifocal motor neuropathy (MMN),” she says, “And through that, I met a man who lives in New Zealand and does cycling fundraisers for MMN. He's the one that brought Andrea to my attention. So, it's really cool that Andrea has worldwide notoriety from what she's done. I reached out to her, and she and her husband Dave were just incredibly kind and encouraging. I really appreciated her welcoming of me and her support. It'll be great to finally meet her in person at the marathon.”
In addition to support, Claire says Andrea also introduced her to the ALS Therapy Development Institute (ALS TDI) and our mission to find effective treatments for ALS – which is, in turn, how she found out about this opportunity to participate in the marathon.
“Andrea put me in touch with ALS TDI, and I feel like the warmth of everybody there has kept me connected,” she says. “It’s like I've been invited into this family of people who truly care about this cause. Then, when I saw the marathon posted on [ALS TDI Vice President of Development] Carol Hamilton's Instagram, I said ‘that sounds perfect because I can run it and raise money for this cause. It sounds like a whole party; it just seems really fun.’”
Andrea, likewise, is thrilled to be taking part in the race on a team with another person with ALS – something, even with all the marathons she’s completed, that she’s never experienced before.
“I am sooooo freaking excited (and scared….but mostly excited) to be participating in THE NYC Marathon,” she says. “And the fact that I get to do it alongside my fellow ALS Warrior, Claire Schulz Bergman, is incredible! I doubt there’s ever been a marathon team with TWO people living with ALS crazy enough to take on the battle, but WE GOT THIS!”
To learn more about ALS TDI’s TCS New York City Marathon team and support their efforts to raise funds for ALS Research, click here.
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