Patient stories

Tommy Danger: Never A Dull Moment of Life

If you couldn’t conclude from his last name, Tommy has never been one to take the ordinary path. Born in Orlando, Florida, but growing up in Indiana, he had large aspirations and felt that there was more out there to see and explore than what he’d been exposed to in his upbringing.

While he nor any of his direct family have been affected by CF, Tommy has greatly supported the CF community through his adventure-based foundation More Than Just Me. It was originally created after a project that Tommy did called More Than Just Miles. This was a run from Seattle, Washington, to Daytona, Florida where he fundraised for his friend’s child, Ethan, who had cystic fibrosis. To be clear, he was the one running and fundraising, making friends along the way and finishing in Daytona on Ethan’s birthday after a long 3,191 miles.  Not only did he finish More Than Just Miles, which sparked the birth of MTJM, but he met the love of his life and now wife, Alyx, on this adventure.

More Than Just Me is all about taking advantage of the life you’re given to the best of your ability through service projects, local and global adventures and fundraisers. The organization wants to empower people to positively affect change in their communities and worldwide. While it is not strictly dedicated to those with CF, most of the projects that Tommy previously created and executed through MTJM are for people with CF due to his initial involvement with the CF community via More Than Just Miles. He has various programs, one even named after a person who passed away from CF who had a deep emotional connection to the work that Tommy was doing in Nairobi, Kenya to help support 20 children with food, toys, clothes and school supplies.  For five years, the Erin Effect has been able to consistently support these students in vital aspects of their lives.

Tommy recounted one of his current projects where he is sending a woman to Disneyland with a few of her family members. She has CF, her son has CF, and her husband passed away from CF. “It’s literally more than just me,” said Tommy, fervently. He mentioned that he’s been so lucky to have this nonprofit run for as long as it has solely through volunteers. Learning the stories of the those with CF has certainly been a motivator to fight the good fight because he’s immensely inspired by their resilience, so “how can I complain?”

One of his favorite facets of his organization are the hidden messages. For example, they recently released a butterfly and lungs design as a tribute to a kid named Logan, who didn’t pass from CF but from cancer which, also, plagued him. The design is a butterfly because after speaking with his mom, she felt like Logan always returned for visits through eagles and butterflies. If you rotate the image to the right so that the neck of the butterfly is horizontal (at 3 o’clock), what is perceived is dots actually spells out Logan’s name!

Tommy has had the privilege to travel with his wife for her work and raise his beautiful daughter, Mayzie, while exposing her to different lifestyles and cultures. Mayzie does not fully understand her dad’s work being only one year into her life, but she is destined to be a world influencer. Tommy recounted that Mayzie makes little messages with her hands and feet that are delivered to people who are hospitalized. Regarding his child’s upbringing, his recommendation to other parents is to watch their own reactions. Children notice, and their brains absorb a lot of external stimuli that shapes how they behave.

The future for Tommy and his family is bright and filled with activities. For his organization, he hopes that they migrate towards ambassadors and athletes who will be able to choose their own cause. He has other projects in the works like connecting CF parents through one trip where they could mingle, ask questions and explore the world. Personally, he’d like to climb Mt. Everest in 2020 and fundraise to go to Antarctica. As for his family, he wants to continue teaching Mayzie to learn more about the world and help her understand things like not every child has a plethora of toys and exposing her to other walks of life.

Through his personal adventures and his organization, Tommy built and continues to build a lot of friendships, “and with that comes heartbreak,” Tommy said. He explained that he’s known people that could do everything right with their treatments, yet CF still takes them at a young age. He has also known people who did not receive their medications quick enough and their lungs took the damage. A cure for CF is necessary, but “until then, you’re just trading one chronic illness for another,” he said disappointedly. He feels that his work is very bittersweet, but nonetheless inspiring. It truly opened his eyes, and he does his best to relay the message to “live your life. And what I mean by that is you get one of it and get to decide how it goes. We’re either trained or taught to live on this track of go to high school, college, get a job, married, etc., but if that doesn’t fulfill you, do what you want because you’ll regret it if you don’t and, as dark as it sounds, die with that feeling.” Tommy believes these words very deeply, and every day he challenges himself to live his best life.

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