Iowa grandmother starts charity devoted to curing cystic fibrosis, gets attention of Iowa State’s Matt Campbell – Ames Tribune

Lynn Marr-Moore of Kelly broke down in tears eight years ago when she found out her granddaughter Charlotte Charlie Hugunin would be born with cystic fibrosis.

The tears gave way to a determination to find a cure for the life-threatening illness that affects the respiratory and digestive systems.

I cried for two weeks because we knew Charlie was going to be born with CF, but its remarkable now how much more hope we have than we did eight years ago, Marr-Moore said. We went from feeling so hopeless to feeling so hopeful.

Eight years ago, Marr-Moore formed a nonprofit called Charlies Angels. It startedwith a fundraising bicycle ride, a suggestion of Charlies father Tim, a Nevada High School graduate. The family, including mother Jenny and older sister Alex, lives in Norwalk.

The nonprofit hasgrown to include about a half-dozen events a year, including the Breathing Life Into the Future gala, which will be held Saturday, Nov. 20, at the Hotel Pattee in Perry.

As long as we are going to raise money for research, we are going to have a good time doing it, Marr-Moore said. Charlie is my everyday loving reminder of what I am supposed to be doing with my life.

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To date, Charlies Angels has raised about $165,000 and has been recognized by the Cystic Fibrosis Foundation.

For a group our size, we raised the most money of all the groups in the United States, Marr-Moore said. We were honored, but were really just here to get this child well, along with the other children with CF.

Cystic fibrosis is considered an orphan disease. Worldwide, there are only about 300,000 patients. Children had a life expectancy of just 3 or 4 years in the beginning. Now we actually have patients who are 74 because the research has come so far.

All of the money raised by Charlies Angels goes to fund research. It is 100% volunteer work.

When we raise money for cystic fibrosis through Charlies Angels, our money actually stays in the state of Iowa, Marr-Moore said. There are 10 research centers nationwide. Our research center is located at the University of Iowa. Its not part of the university, but they have the lab facilities.

Its the only research center in the United States that's working on the cure. And we have been invited over there several times to meet with the researchers.

The Breathing Life Into the Future gala starts at 5:30 p.m. with check-in and a cash bar. Dinner is at 6 p.m. The evening will includeguest speaker Jim Scholten, a live auction, and a performance by the dueling pianos of Mike and Andy from 8-10 p.m.

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Charlie has won the heart of Iowa State football coach Matt Campbell, Marr-Moore said. She said it began when she was in his office one day hoping to talk to him.

I told him I have a sick granddaughter, and he was so receiving, Marr-Moore said. He said, Tell me about Charlie. So I did, and when I was done he asked how he could help.

Thats how the event Lunch with the Coach started. It is an annual opportunity for Cyclone fans to attend a luncheon and hear from Campbell.

I think Charlie was 3 years old the year coach Campbell invited her to spring practice, Marr-Moore said. She was wearing her Iowa State shirt and a tutu and her cowboy boots. After practice, Matt walked over to us and picked up Charlie.

She told coach Campbell, You know, my dad likes those Hawkeyes. And Matt just smiled and said, Well fix that.

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It's Charlie's job tointroduceCampbell at the lunch. The last time, she stood on a chair so she could reach the microphone.

Charlie said, Matt Campbell is my best friend. Hes helping me so Im not sick. And hes really cute, and the place just exploded, Marr-Moore said.

Events to watch for in 2022 include Noodles and Doodles, a pasta dinner by gourmet chef Tim Winter; apainting class with Slater artistShawn Palek; the annual bike ride in the summer; a fashion show starring Charlie; and a continual can drive, where people can donate their empties anytime.

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Iowa grandmother starts charity devoted to curing cystic fibrosis, gets attention of Iowa State's Matt Campbell - Ames Tribune