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We are here to help people with CF get the insurance coverage they need. Hear how the Foundation helped the Cox family.

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In the Spotlight

Josh Mogren (and Moganko, too!)

When the package arrived in the mail, Josh Mogren couldn’t wait to open it. It was 2009, and Josh, who has CF, was 31 years old.

He carefully cut into the box, reached inside, and pulled out a big, silly-looking orange puppet he quickly named Moganko — and his life hasn’t been the same since.

Moganko, the Early Days

At first, Josh wasn’t sure exactly what to do with the puppet. A lifelong fan of the Muppets, he remembered how much he and his sister Angie loved watching the show while they did treatments for cystic fibrosis, a disease they both shared. So he set out to make a series of video episodes featuring a loveable puppet named Moganko who learns about cystic fibrosis and the importance of CF therapies through Josh’s silly stories and catchy songs.

Josh-Mogren-collage

Josh traveled to California this June to help raise funds and awareness for the CF cause as the featured speaker of the Northern California Chapter’s A Night of Wine and 65 Roses event and the host of Josh’s Kids Day, where local CF families enjoyed some laughs with Moganko.

“I do what I can to bring a little bit of joy to people dealing with the disease — even if just for a few minutes,” Josh says. “I try to take a scary thing like CF and put a silly spin on it, to help make it tolerable — I just want kids with CF to be happy.”

Things didn’t go so smoothly right from the start. “It’s way more work than I imagined it would be,” he says with a chuckle. “I’m a terrible puppeteer. Thankfully I’m a good editor.”

Josh relied heavily on his storytelling skills and personal experiences dealing with CF. He also reached out to other adults in the CF community who believed in what he was doing. Fellow CF advocate Emily Schaller appeared in one of his videos, and he hopes that more will make guest appearances in future videos.

When he wanted to add music to the productions, the University of Minnesota’s Basses Wild Men's A Cappella jumped at the chance to help, working with Josh to arrange and co-create the melodies to go along with Josh's lyrics.

In just a few years, the native Minnesotan’s videos have brought smiles to thousands of families affected by CF all over the country — and the world.

Starting a New Campaign for CF Awareness

Today the 33-year-old volunteer, musician and blogger, who lives in St. Paul, Minn., with his wife Carly and their two dogs, continues to produce online videos to help motivate and inform kids with CF about how to stay healthy. He also regularly updates his popular blog, Welcome to Joshland, which is geared more toward teens and adults.

“My main focus is to take care of myself,” says Josh, who also manages the cognitive and physical effects of an additional medical challenge, cerebral palsy. He is diligent about being compliant with his CF treatment regimen, doubling up his efforts when he feels sick and traveling once a week to his clinic for an IV vitamin infusion.

Josh-Mogren-Running

Determined to work through the physical challenges of having CF, asthma and cerebral palsy, Josh completed a 5K  in September 2010. He says about the experience:  "I finished a 5K! It wasn't
pretty, but I finished it and I am proud of that."

His latest creative venture is a CF awareness campaign with the goal of having Moganko and the Muppets team up in a public service announcement about CF. “The Moganko for Cystic Fibrosis Awareness Project is all about connecting with people who don’t know what CF is,” Josh says.

Raising Funds to Create a Brighter Future

Josh has been an advocate for those with CF his entire life, volunteering for the Cystic Fibrosis Foundation along with his older sister Angie when they were both in grade school.

In 1993, when Angie was just 16 years old, she passed away from CF. “When she died, it was so devastating,” Josh says. “It’s been a long time, but I still think about her every day.”

Inspired by his sister’s courageous life, Josh continues to help raise funds for the CF cause, giving speeches at CF Foundation events, walking in Great Strides and using his creativity to inspire friends and people with no direct connection to CF to become involved.

Josh is grateful to see the significant progress the CF Foundation has made in the search for a cure, especially in recent years. Yet every day he confronts the devastating effects CF continues to have on his family and thousands more.

“If we can continue to raise funds and awareness, we can help children not have to go through the hard stuff so many adults like me have gone through,” Josh says.

“I want my efforts to help little children and young people with CF so they can achieve greater things than I ever did. And if I have to do it with an orange puppet and silly songs, that’s what I’ll do.”

 

Posted 7/26/2012

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