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Finneran: Two Fathers, Two Sons, One Dream

Friday, July 21, 2017

 

Tom Finneran

The news hits like a thunderbolt. Strong men tremble with hope. Stronger women hold their families together through the long march of adversity. Tears are shed over what might have been.........more tears are shed over what might yet be. A cure. A miracle. A triumph.

The two dads are friends of mine. Their two sons, Joey and Bobby were and are the centripetal forces in their lives. Meet Joe O’Donnell and Bob Coughlin, two dynamic guys whose instincts and talents were brought to the fore by their sons. Meet Kathy O’Donnell and Christine Coughlin whose thoughts never strayed from their sons and the sons and daughters of a thousand other families. Finally, meet the monster that has plagued those thousands of families. Meet cystic fibrosis.

It’s a deadly genetic disorder, most often affecting the lungs but also affecting other organs. Cystic fibrosis patients are for the most part quite young. That’s because the disease effectively smothers the lungs, limiting a patient’s ability to breathe. Patients suffer from persistent lung infections because they cannot clear bacteria. And those lung infections exact a horrid toll. Patients don’t get old. They die young.

Joe and Kathy O’Donnell lost their son Joey in 1986. He was just twelve years old. Bob and Christine Coughlin’s son Bobby is alive. He is fifteen and he is rather fortunate in that he has his mother’s good looks. He’s even more fortunate because of the mission which Joe and Kathy O’Donnell embarked upon after burying their son............

In the midst of their heartbreak they showed a stubborn Irish determination to beat this enemy which robbed too many children of a healthy life. They started the Joey Fund, a now legendary effort to find a cure for the disease. Some thirty one years later came the thunderbolt.

Vertex Pharmaceuticals, a fabulous company located right here in Boston and Cambridge announced some tremendously encouraging new from several clinical studies.

I won’t bore you with the science but for one quote from the Boston Globe story announcing the news:

“Data from clinical studies confirmed lab research suggesting the three compounds together could bind to misfolded mutant proteins and fold them correctly so they can move to the surface of cells allowing those cells to function properly.”

Huh??? The science is astounding. These are bank shots within bank shots, to my mind far more difficult than a mission to Mars. After all, we know where, when, and how Mars moves. But nature’s many diseases are adaptive, using camouflage, false signals, and developed resistance to many treatments. Consider that defective cystic fibrosis genes all have slight abnormalities from normal functioning genes. Those abnormalities are called mutations. And there are more than 1700 known variations! Go ahead. Solve that puzzle. It’s like finding the smallest needle ever made in the biggest haystack of all time. God bless the scientists.

The O’Donnell and Coughlin families know the science fairly well. People whose children are sick do deep dives into the particular disease affecting their child. But these two families did more than learn the science. They provided the heart and soul of an astounding effort to fund research and find a cure. Joe and Kathy’s scar tissue became the foundation upon which the Coughlin and other families find hope and inspiration.

We see and hear evidence that America is badly divided, that our political polarization is not only increasing but that it is increasingly shrill. Yet America in many ways remains unique---a generous, thoughtful people, determined to improve the human condition. “Only in America” is the phrase that captures the essence of our soul and of our best work. That work improves the world.

I imagine that young Joey O’Donnell remains a precious little boy in the minds and memories of Joe and Kathy. Yet there must be some consolation in knowing that in a very meaningful way he still lives in the work of the Joey Fund.

Young Bobby Coughlin might look forward to a future liberated from fear. His liberator was Joey O’Donnell.

Tom Finneran is the former Speaker of the Massachusetts House of Representatives, served as the head the Massachusetts Biotechnology Council, and was a longstanding radio voice in Boston radio.

 

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