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A Dedham Family Fights for a Cystic Fibrosis Cure

The annual CF walk comes to Dedham on May 20 as the Coughlins and thousands of other families seek to find a cure.

 

Bob and Christine Coughlin have participated in the annual Cystic Fibrosis Walk in Dedham since the walk's second year in 1996.

Little did they know at that point that their push to raise money for Cystic Fibrosis research would grow stronger.

"It was an ironic twist of fate," said Bob Coughlin. "We were involved in a fairly rare disease, and then it got real personal, and we've stepped it up."

In 2002, the Coughlins had Bobby, born with Cystic Fibrosis. And ever since that day, the now 10-year-old bottle of energy must go through a daily regimen of taking enzymes, other medication and using a nebulizer.

If he doesn't, he could be in trouble.

The combination thins mucus build-up in Bobby's body, which can cause dangerous and painful blockages of organs. Respiratory and digestive problems are always a concern, Bob Coughlin said.

"We've been fortunate. He's been healthy the last several years," the former state representative said. "We try to do our best to keep him as healthy as possible so that when these therapies in the pipeline do become approved [he can take them]."

Cystic Fibrosis affects 30,000 children and adults nationwide with the average patient living until their late 30s, according to the Cystic Fibrosis Foundation.

One drug, Kalydeco, is FDA approved but only treats 3-4 percent of patients, said Coughlin, the president and CEO of the Massachusetts Biotechnology Council, which advocates for cutting edge biotechnology research.

"[Kalydeco] doesn't work for Bobby, but there are others in the pipeline that we are all very confident will make a significant impact on treating the disease," Bob Coughlin said.

So the fight is on to find a cure for Cystic Fibrosis, for medications that can combat the scores of mutations that all act differently within a patient's body.

Dedham has been at the center of that fight for 17 years, and it will continue at 11 a.m. on May 20 with the annual 4.2-mile walk through Oakdale.

"A lot of people are choosing to come to this walk [from other towns], which I think is more of a neighborhood walk," said Christine Coughlin. "There are families with brand new babies that are coming to Dedham to walk."

The walk attracts 1,200 supporters - several of whom are living with CF - to the with the goal of raising $270,000 alone this year for the Cystic Fibrosis Foundation, said Kelly Doucette, an organizer of the walk.

"This is not a small little project we have here," Doucette said. "Dedham is so successful because of the teams we have."

Registrants can sign up to support or join one of many "teams" - including Bobby's Brigade, the largest one at the walk.

The walk loops through mainly the Oakdale neighborhood, and ends back at the Endicott Estate with a free cookout and family games for the kids.

"We have a lot of support from the community," Doucette said. "We make it a fun family day for everyone involved."

While it is a day of families and kids with Cystic Fibrosis to come together, everyone there has the same goal in mind.

"Please come out to the CF Walk," said the young Bobby Coughlin. "[I want people] to raise money for a cure for CF."

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