Race CF Pedals On in Fight Against Cystic Fibrosis
Race CF is a cycling team with a mission and message. The mission is to support brothers Tom and Manny Goguen as they race bikes and battle cystic fibrosis (CF), for now an incurable disease. The message is – through the brothers’ experience on the bike and a new film about them – to promote the health benefits of aerobic exercise for others with CF. In many ways, Race CF is an extension of the Goguen family of Hopedale, Mass. Tom and Manny have eight siblings, though they are the only two with CF. The rest of the family, however, is involved with racing for and running the team. Cycling is a family bond and – literally – medicine that helps to keep Tom and Manny as healthy as possible.
The team’s story is powerfully told in the new documentary film “Racing to Breathe,” which chronicles Tom and Manny’s 2013-14 cyclocross season. The film, directed by Race CF member Andrew Goodale, premiered early this year in Boston with more than 250 people attending. Patrick Goguen, who is Race CF's director and Tom and Manny's brother, said the team is developing a new website, www.racingtobreathe.org, to make the movie available to anyone online, especially those searching for information on cystic fibrosis. The plan is to have the website live by the end of the cyclocross season around the holidays.
Tom Goguen, seated, with brother Sean aboard the Race CF team bus. The former school bus is fully outfitted for a cycling team and is provided by a generous sponsor, according to dad Ron Goguen.
“It’s really focused on spreading the word about how cycling for Manny and me is so healthy and good for our lungs and keeps us out of the hospital,” Tom Goguen said of "Racing to Breathe." “We really just want whoever wants to see it just to see it. If somebody knows somebody who has a friend with cystic fibrosis, I want that person to see it. I don’t want somebody with cyclist fibrosis to be sitting around and not doing anything because they can’t and their lungs are really getting worse and worse because they’re not doing anything.”
CF is an inherited disease that affects the lungs and digestive system of about 70,000 people worldwide including about 30,000 in the United States, according to the Cystic Fibrosis Foundation. With CF, a defective gene and its protein product cause the body to produce unusually thick and sticky mucus that clogs lungs and leads to life-threatening infections. CF also hampers digestion by obstructing the pancreas and stopping natural enzymes from breaking down food. In the 1950s few people with CF survived to attend elementary school, according to the Cystic Fibrosis Foundation. Now, thanks to advances in research and treatments, many survive into their 30s, 40s and beyond. Exercise is important for maintaining lung health, the foundation noted.
The Race CF bus, shown here at the Providence Cyclocross Festival, is a gathering spot for teammates, family and friends.
For parents Ron and Gerrie Goguen, cycling has evolved from a hobby to a family calling and outreach effort.
“When my kids were born the life expectancy was 18, and we didn’t know anything about cystic fibrosis. We were devastated, just wrecked,” said Ronald Goguen, Tom and Manny’s father. “Now that the life expectancy is 38, any parent is (still) going to be wrecked. If they had a resource… see the documentary… That immediately would sooth them and give them some hope. Yes, we race anyway but why not do it for a great reason? … That’s why it’s Race CF. The best thing we can do is have a family with someone who was just born with cystic fibrosis just be able to see what the benefits of vigorous aerobic exercise can do for their kids.”
The Goguens are formidable competitors on the bike. Manny is a USA Cycling Category 1 racer who has competed in UCI Cyclocross World Cup Events. Tom recently upgraded to a Category 2 racer on the road. What makes those accomplishments even more impressive is that while cycling helps Tom and Manny cope with CF, the disease makes cycling difficult because it affects lung function and digestion. Manny and Tom often battle suffocating coughing fits or cramps on the bike. Brother Peter Goguen is the current junior 17-18 US National Cyclocross Champ. Kevin Goguen took back-to-back victories in the junior 15-16 races at the Providence Cyclocross Festival. Patrick Goguen, the oldest of the 10 siblings, runs the teams.
Brother Kevin Goguen on his way to victory at this month's Providence Cycloross Festival. Below, Kevin atop the podium.
Ron Goguen first became intrigued with cycling years ago watching the Fitchburg Longsjo Classic. His children, starting with the eldest Patrick, have embraced and found a common purpose on the bike.
“Our practices even are right out the driveway. They all go together. They have an eight-mile loop and they just drop off the youngest one after one or two laps, and then the next one,” he said. “Every weekend everyone goes the same place, and they just race at different times. So everyone cheers for the other one racing. What could be better?”
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