Man with Cystic Fibrosis Races to Help Others – Part 2

“We all get along and race together. The family life, the company, the team, the social life, we are very much in this together.” – Manny Goguen

Manny Goguen, a 24-year-old man living with CF since birth, is a most impressive individual (as described in Part 1 of this post). While working at JL Gallagher, he is also President of Race CF, an inspirational cycling movement, designed to help support persons and those living with CF.

Race CF started out as a bit of a family initiative.“Back in 2010 we started a team called Team CF that we all rode for, to raise awareness for the disease and promote the idea that exercise could help keep you healthy, for those with CF. We started the team with the help of a doctor in Philadelphia, together for two years, but then we split ways on good terms and started doing it on our own,” Manny describes.

“As of four years ago, it’s called Race CF. For the last four years we have just kind of been a cycling team and we compete all around New England. We will also go out to the national championships held in different parts of the US…The team has also gone to Canada to Race. I’ve had the chance to race over in Belgium!” Manny explains.

Manny in action biking
Manny in action! Source: www.russcam.com

While Race CF is competitive and travels all around the world, they are also a certified Non-Profit with the noblest of missions: to directly help those with CF. So, in 2013, Manny and Tom set out to spread the encouraging message that regular, fun physical activity can actually enhance one’s life with CF.

“One of the things that we are really excited about is a documentary that followed Tom and me in racing (available here). We want to push the documentary as a way to encourage kids with CF to be active,” Manny reveals.

“Before we talked about doing Team CF (Race CF’s previous name), nobody we raced against really knew we had Cystic Fibrosis. We said ‘Wow. We can make something good out of this and help others with CF.’ That’s what made us go public with it and start the team. The documentary is helping the mission of the team.”

Race CF team training and biking
Race CF team training

Manny doesn’t hesitate to show his admiration and gratitude for his teammates, “The idea came from our teammate Andrew Goodale, who did some filming in college. He and my older brother Patrick were the ones that got that idea. Andrew initiated it and Patrick jumped on board. They are the ones that really made it happen. Andrew filmed it himself, with one camera and go-pro cameras on the bicycles.”

Manny continues, “It’s pretty amazing how it came out with so few cameras! Another teammate Case Butler, also wrote a lot of the music for the documentary.”

In addition to praising his friends and supporters, Manny is eager to talk about members of his family, recognizing them for their accomplishments in Race CF, “My brother Peter has won one National Championship in 2014 and he’s also medaled on a few other occasions. Tom medaled on another occasion too!”

Manny's brothers Tom and Kevin
Manny’s brother and CF warrior Tom, and their brother / Race CF Junior Elite Team Captain Kevin

I welcome the deep appreciation the President of Race CF has toward his family and friends. Manny lovingly describes how Race CF and his family play into his life,

“Our family all really gets along and everyone backs each other up. I think that is helpful and really, it’s a blessing. We all get along and race together. Everyone’s just kind of in this. The family life, the company, the team, the social life, we are very much in this together.”

Brothers Kevin and Manny
Brothers Kevin and Manny

Manny also fondly remembers how different team members came to be and how they’re family and friends are also involved with the movement.

“We met Evan and his family this past fall at one of the bike races we were attending. He, like Tom and I, has CF. Evan’s family, like mine, are very supportive. He goes to the same hospital as Tom and I, and the doctors told them about how we ride to stay healthy. I’m happy to say that Evan is now on our team and eager to race with us this summer!”

While the atmosphere of Race CF is clearly one of support and love, the practical applications of Race CF and cycling in general, are astounding. “Cycling is therapeutic in a few ways: 1) It will initiate a cough that helps us remove mucus; 2) Being fit and working your lungs, to me it seems, my body is so much more able to take care of itself to kind of overcome the disease; and 3) If I want to race competitively, and I want to do well, I have to make sure I do all my medications and sleep right.” Manny explains.

“So having these goals forces me to stay on top of my medications and to make sure I get all of them in. So it’s kind of keeping me motivated, keeping me on top of my medications, and keeping me healthy and stronger.”

The way Manny fervently speaks about helping others with CF is not just inspirational, it’s truly extraordinary.

“The ideal situation would be for me to work full time for Race CF and that way, getting much more opportunity to reach more and more people. I would love to go to more CF events and Cycle for Life rides, and go around the country if our organization had the funds and I had the time.”

So how can you help Manny and Race CF’s mission of helping as many CF patients as possible? Race CF is now a 501(c)3, Non-Profit, Charitable Organization. You can donate to Race CF here. I eagerly encourage each of you to check this effort out, and do what you can to help Manny and Race CF achieve their goals.

“Hopefully soon our organization will have grown enough to help all those with CF become athletes with CF!” – Manny Goguen


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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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