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    Person of the Week
    Saturday, June 01, 2024

    Nicole Burke is on a Mission to Outrun the Odds

    On April 4, Clinton resident Nicole Cretella Burke started a Facebook group called OutRUN The Odds to support Liz Shuman, her lifelong friend who has cystic fibrosis (CF).

    By April 30, she and Liz were being filmed for a segment on The Today Show, which had caught wind of the group. It is expected to air within the month, but Nicole doesn't yet know the exact date.

    According to the Cystic Fibrosis Foundation (www.cff.org), CF is a genetic disease that mainly affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, leading to life-threatening lung infections, and obstructs the pancreas, stopping natural enzymes from helping the body break down food and absorb nutrients. There is no cure.

    The average life expectancy of a CF sufferer in 2014 is 38. Liz will turn 38 on Sept. 6.

    Nicole and Liz met through Madison Park & Rec Gymnastics about 30 years ago and have stayed friends throughout their lives.

    "There were several years in there where we were absolute best friends," says Nicole. "We did a lot of our growing up together in those years between middle school and high school."

    When Nicole started the Facebook group that Friday at the beginning of April, her goal was to do something nice for Liz, who was emerging from a long hospital stay. The idea was to have friends log miles they'd run to dedicate to Liz. Nicole figured it would be great if total posts on the page reached 3,800 miles by Liz's 38th birthday in September.

    Instead, they hit that number on April 13-nine days after they began.

    Nicole's Own Health Struggle

    About a year and a half ago, Nicole and her husband, Keith, had recently moved back to the area from Vermont. At the time, Nicole says, "I was significantly overweight. I have two small kids [Cooper, 6, and Lucy, 4], and one day while skiing with my son, I realized, 'Oh my gosh, I'm that mom who's not going to be able to keep up with her kids.' I decided to start packing my food and paying attention."

    Since that day on the mountain, Nicole has lost 66 pounds.

    "I went to Northeast Fitness Factory in Clinton kind of on a whim one day and absolutely fell in love with this community there. I started working out a little bit, and then one day I saw Liz running on Middle Beach Road."

    It had been 17 years since they'd seen one another.

    Nicole soon learned that Liz's running was helping to fight her CF symptoms. Last May, while Liz and Nicole were participating in the Cystic Fibrosis Foundation's annual Great Strides walk in Madison, a man whose daughter has CF and was inspired by Liz saw Liz running and asked her when she'd had a lung transplant.

    Nicole recalls, "She laughed and said, 'I didn't have a lung transplant. I'm just a runner and that keeps me healthy,' and I had this moment of realizing, 'Oh my God-running keeps her alive. She's beating this disease with running.' We got back in stride and I told her how amazing that exchange was. She asked me if I wanted to do a half marathon. I said, 'Of course!'"

    OutRUN The Odds is Born

    Nicole says, "Last summer and fall, I would often run the shoreline and post my thoughts on Facebook, which kept giving me these ideas that I should do something.

    "Liz's CF was really bad last year. Meanwhile, I was really getting into running and had started training for a full marathon. One day I ran 13 miles and I thought, 'If I can run 13 now, I can run 26 in a couple of months.' I ran more and she got sicker, and over the course of that time, I had her on my mind, thinking about how I was running because I can and she can't. I worried about how it would make her feel. But when I told her I was training for the marathon, she was my biggest cheerleader. I ran my first marathon in October."

    Nicole kept running, and about six months passed, bringing Nicole to the day she started the Facebook group that has taken on a life of its own.

    "Liz was in the hospital on a Thursday night getting ready to be released, and I was on a run and I thought, 'I bet I could bring people together to run. That would make Liz feel good.' So I was texting Liz's sister and texting some friends asking them to tell me how much they run every week."

    They did, and somebody suggested Nicole take the query to Facebook. She started an online group called OutRUN The Odds, which now also has a website (www.outrun38.org) and goes by the name OutRUN 38.

    "I invited people [to join the Facebook group] I knew who ran, and 12 hours later we had 1,000 people. That weekend we hit 1,000 miles. My goal had been to hit 3,800 miles by her 38th birthday in September. On day nine of this group existing, we hit 3,800 miles. Right around then The Today Show called wanting to do a story. It just kept spiraling, so then I wanted to keep going for 38,000 miles. Less than a month into it we had run 27,000 miles. So my new challenge for the group for May, which is Cystic Fibrosis Awareness Month, is to run 38,000 miles in one month. We're not stopping; we're just going to keep going."

    At the beginning of this week, the group had more than 3,225 members from six countries. They log their miles from not just running, but also walking, biking, kayaking-any activity that promotes fitness.

    It's About Friendship

    "Very early on, we wondered, 'What is it about this that's so interesting to people?'" Nicole comments. "It is about cystic fibrosis, but it's about friendship. I think that's what makes people get really into it. It was one small thing that makes a huge difference, and I think people are pretty hungry to get into something. And I've never met a runner who doesn't like to talk about running. Everyone likes to say, 'This is my run and this is what I did.'"

    Nicole has been following the call to reach as many people as possible in her new role as a literacy specialist at East Lyme Middle School, too.

    "I'd been teaching middle school language arts for seven years," she says. "Now I do mostly professional development curriculum work with teachers. I made that change from being in the classroom because I felt like I could reach more kids and more teachers."

    She has also found herself in the unexpected role of fitness mentor.

    She explains, "For me, a lot of this is about fitness and healthy living...What I'm starting to see emerge out of OutRUN The Odds is that people will message me and say, 'I've always wanted to do what you did,' in terms of my physical transformation. People will say, 'I want to start, and you've inspired me to start.' So now there's sort of this background coaching piece that I'm so inspired by.

    "My mother is 64 years old, ran her first mile of her life because of this, and now she's running more and more. And there are two women who have been emailing me regularly who are both in a hard place with their fitness. I advise them on what to eat and what to do, and they're changing their lives. It's important that people know that this is about CF awareness, but it's also about taking that step to do something for yourself."

    As far as the Facebook group that became a revolution, Nicole says, "We're open to whatever this becomes. This whole thing has been so organic that we want to keep going with that. There's a possibility that this could be OutRUN 38 for other orphan diseases, not just CF."

    An orphan disease is a disease that the federal government doesn't support financially. CF research receives no federal funding because there are too few people living with it.

    "There's tons of money for cancer; there's tons of money for diabetes, but for CF it's all privately funded," Nicole points out. "We would love to have branches of OutRUN 38 where different orphan diseases benefit from this."

    Nicole is looking forward to two events in the coming months. The Great Strides walk in Madison will be held Sunday,

    May 18 at the Surf Club. OutRUN The Odds has its own event on

    Aug. 2-a 5k going from the Madison Congregational Church to the Jeffrey School.

    "We want to grow, and as we grow, we want to be really aware of all the ways we can target research," Nicole says. "We've raised more than $4,000 for the Great Strides walk, and we've just switched over to having our own donations. Some of that money will go to the CFF and some other CF-related stuff and then to sustain OutRUN The Odds. We're in the process of organizing our own event in Madison. We're encouraging the people in the group-we call them the Outrunners-to come to the Great Strides event so they can meet Liz. So many people in the group haven't even met her yet."

    For more information, visit www.outrun38.org, www.cff.org, or search for OutRUN The Odds on Facebook.

    To nominate someone for Person of the Week, email Melissa at m.babcock@shorepublishing.com.

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