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05/03/2023 08:21 AMBefore he turned 24 years old, Jeffrey Cohen passed away from cystic fibrosis (CF). Since then, his family, including his mother, Meg Cohen of North Haven, have kept up the fight to bring awareness to the rare condition that is currently affecting tens of thousands of people worldwide.
Her voice and Jeffrey’s memory will be present at the Great Strides 5k Walk in West Haven on May 7. The event is one of the many that have occurred in cities across the United States to raise awareness for cystic fibrosis. Like other orphan diseases, cystic fibrosis affects a small percentage of the population, and a cure is yet to be discovered.
“Great Strides is part of the national CF [F]oundation. It’s our annual national fundraiser, but that’s the one that really gets the money to help fund this kind of stuff,” says Meg.
According to the Cystic Fibrosis Foundation, the rare disease is “a progressive, genetic disease that affects the lungs, pancreas, and other organs.” The organization estimates that close to 40,000 children and adults live with the disease in the United States, making up 38% of the global diagnoses.
While there is no cure or medication to combat the disease, Meg, her husband Joel, and their daughter Bonnie continue to fight for them. With the support and participation of friends and family, spreading awareness has been Meg’s work for the past 27 years.
“I was always very vocal, and so was my husband, about what Jeff had, what his situation was, because we wanted it to be a learning experience for other people,” Meg says.
In her activism, she and the Cohen Connection cohort of supporters, led by Bonnie, have raised over $140,000 in honor of Jeffrey and others with cystic fibrosis.
Having his condition did not slow Jeffrey down from living his life to the fullest as a spirit and humorous person. Despite the stress of the disease on his lungs, he played Little League baseball, went skiing, and tried out for his high school basketball team.
He was a sports junkie who loved the Pittsburgh Steelers and found time to catch the World Cup while his family was on vacation. He found a great love for sports journalism and served as the sports editor for his high school newspaper.
But out of all sports he loved, “he lived for hockey,” says Meg. “He was almost this savant. When it came to hockey, he knew his players’ statistics.”
His knowledge of hockey was so extensive that out of the blue, he even recognized the owner of the former Minnesota North Stars, Norm Green, at one of their games.
At his schools, the teachers and students were very supportive of Jeffrey, even if they had not known anyone with a rare disease like him.
“None of the teachers or administration had ever dealt with a kid with cystic fibrosis. So it was a learning experience for them. The teachers became part of your family,” Meg says.
She recalls a time when Jeffrey was not present in his seventh-grade science class when he was going to live his dream of meeting the New York Rangers hockey team and watching them play the New York Islanders.
“He told the class about it. And they were all excited. But they didn’t understand why he was going to participate in a wish program. And they asked their teacher, ‘Is Jeff sick? Is Jeff going to die?’ And the teacher, who was also a mother, had a long talk with the kids. She told them what Jeff had and that he was doing OK. And no, he was not going to die now, but his life was going to be shortened because of the illness. She made the kids promise that when they got to high school…that they just watch out for him. And don’t let anybody hurt him. Because then he was going to be surrounded by a lot of students that didn’t know him. Whereas he was in the safe zone with 20 kids who knew him and protected him.”
Jeffrey also held several part-time jobs, including at a video store, a yogurt store, and the drive-thru at a Wendy’s in his hometown of Milford.
Throughout the previous almost three decades, Meg has been a part of many other fundraisers for cystic fibrosis research and has surrounded herself with people who feel as strongly as her in searching for a resolution to diseases that take the lives of too many.
“One of my other fights is Alzheimer’s because one of my dearest friends’ dad passed from Alzheimer’s before they really knew much about it. And my friend has gotten involved on a state level since she retired, and she now goes to Washington, D.C., and advocates with our Congress, men, and women for more funding. So you have to have a passion, and you have to fight for those who can’t fight for themselves.”
For anyone interested in participating in the Great Strides 5k walk, Meg has a message for them as to why they should walk alongside her and others fighting to make a difference.
“They would be walking for camaraderie, for family, having a good time, celebrating all of those that have CF and are fighting every day to have a good life. And in honoring what we all call our CF angels, who fought the fought, lost their battle, but they’re still with us every day,” she says.
She also has a message for anyone struggling with an orphan disease or is a family member or friend of someone struggling with one.
“Be active, be aware, fight to make things better, not only whether it be for yourself, your child, your family member, because we all need one another to help one another. Get the best for everyone.”
To register for the Great Strides event in West Haven, visit https://fightcd.cff.org. For more information, email Meg at meg220@sbcglobal.net.