Kelly Manz’s passion for helping babies with congenital heart disease, or CHD, is taking her to the Super Bowl.
Manz, a resident of Lee’s Summit, started a nonprofit called CHD Babies after her daughter, Chloe, was born with a heart defect in November 2008.
She’s championed a change in Missouri state law and raised nearly $85,000 through the Run for Little Hearts event she’s organized since 2014.
When she started a blog that became a full-blown website that spawned the nonprofit and gave rise to the annual charity race shortly after Chloe’s birth, Manz had no way of knowing it would lead her to the pinnacle of North American sports Feb. 4 at U.S. Bank Stadium in Minneapolis.
But she’s thrilled for the opportunity.
“It’s an honor,” Manz said. “It really is. I try my best to raise as much awareness as I can. I’m very passionate about it — I mean, every single day. I finally found something I feel like I was meant to do, like my calling.”
She owes a special debt of gratitude to Carolina Panthers All-Pro tight end Greg Olsen, because were it not for her deep admiration for Olsen, the Super Bowl trip wouldn’t be happening.
Much like Manz, Olsen had a child — twin T.J., who is now 5 years old — born with a heart defect. That prompted Olsen to start the HEARTest Yard, which provides in-home aftercare for families of children with congenital heart disease treated at Levine Children’s Hospital in Charlotte.
When Olsen was among five NFL players selected by Microsoft to participate in the Create Change Contest, it also set the stage for him to pick Manz — a Chicago native and Bears fan, who follows Olsen on social media — as the grand-prize winner after she peppered his Instagram page with posts about her charity, using the #CreateChangeContest hashtag.
“When someone at that level takes the time and energy to raise awareness for heart defects, just like (talk-show host) Jimmy Kimmel, it’s awesome to people like me,” Manz said. “There’s just not enough awareness, so I just like bow down. I feel like I’ve basically been stalking (Olsen) for three years.”
She’s messaged Olsen’s account and emailed his foundation, asking him to appear at her annual race and meet local families with children who have heart defects.
“I’ve never gotten a response, which is fine, but … sitting there one day his video pops up about how he creates change and encourages other people to do so,” Manz said. “I was like, ‘Sweet,’ so I posted about it and used the hashtag.”
Manz didn’t read any rules — even violating one about posting only once — and didn’t have high expectations, since it was a nationwide contest, but CHD Babies captured Olsen’s attention.
Although, it took Manz longer than she would have liked to find out.
“I remember the contest ended Dec. 12 and I was checking my phone like a teenage girl,” Manz said. “Is my volume up? Do I have bars? Do I have any messages? It was insane. I literally thought, because they said the contest ended Dec. 12, they would announce the winners. But I never heard anything.”
Manz had accepted that she hadn’t won and even forgotten about it when Dec. 22 she received notification on Instagram that Olsen had picked her charity as his winner.
“I was genuinely shocked and surprised and screaming and excited,” Manz said.
Less than a year after Chloe’s birth, Manz crafted and championed a law that mandates pulse oximetry screening for every newborn in Missouri, unless a parent opts out on religious grounds. The test measures oxygen in a baby’s blood and is useful in early detection for CHD.
It took nearly five years, but Chloe’s law took effect Jan. 1, 2014. After winning that fight, Manz turned her attention to raising money for the cause.
“It was very healing for me to go out and help other people, when I thought about all the other people going through this or who might go through this,” Manz said. “So, that’s how it started.”
Now, her Run for Little Hearts — a charity 5K, 10K, walk and kids’ dash — has grown from roughly 400 runners (and $6,000 raised in 2014) to more than 2,000 participants (and $40,000 raised in 2017) during its first four years.
“My goal is obviously to increase both numbers every single year, so I’m hoping for 2,500 people and I’m hoping to raise at least $50,000,” Manz said.
Registration is already open for the 2018 race, which is June 23 at Arrowhead Stadium, which draws families from across the region — St. Louis, Omaha, Illinois — as its grown in stature as a unique event for CHD families.
“It’s really turned into like a festival now,” Manz said. “I have food trucks and inflatables. We’re doing the whole ‘Wizard of Oz’ theme this year, so it’s become like a party for all these families to come together and the family that supports them.”
This year’s race even features a “Wizard of Oz” theme, because of the Tin Man’s quest for a heart and the Cowardly Lion’s quest for courage, which “he had all along, much like our CHD Warriors,” Manz said.
Proceeds from the race benefit numerous projects — including the CHD Babies Fund for Research at Children’s Mercy Hospital; CHD Families, which sponsors Camp Systole; and Strive for Life, which helps fund mobile screenings at local schools and community centers among other endeavors.
“Being a small charity like mine, just a blip on the map, to be able to go to the Super Bowl and pass out my business card and meet people and tell them more about Chloe and all the kids that are born with heart defects is going to be an amazing opportunity,” said Manz, who is taking her twin brother, Jason, with her to the game. “… I feel lucky to be able to be at the event, whether I meet Greg or not.”