Remembering my son, Brian Christopher Long
This Father’s Day weekend, please take a moment to remember – Never underestimate what we can learn from our children.
Rest in Peace, Brian. We all love you.
Brian Christopher Long, 51, of Boston and Provincetown, passed away on Wednesday, June 14, at Massachusetts General Hospital after a lifelong courageous battle with Cystic Fibrosis.
Brian was raised in Tewksbury, by his mother Pierrette Long, along with his father Robert ‘Bob’ Long and Brian’s loving step-mother, Muriel Long.
He is also survived by his husband, Ed Feijo of Boston, his brother Bobby of Bridgewater, and sisters Whitney Long Jenness and her husband Cole Jenness. of Marshfield, and his sister Pamela Axford and her husband Russell of Plymouth.
Since his earliest years, Brian’s handsome face and tousled blond hair distinguished him as a charming and recognizable ambassador for the Massachusetts and Rhode Island chapters of the Cystic Fibrosis Foundation, helping to raise millions of dollars to combat the genetic disease that affects the lungs and digestive systems.
Brian and his extended family dedicated most of his life to battle Cystic Fibrosis (CF) by spearheading multiple fund-raisers. He helped start the first Walk to Cure Cystic Fibrosis, aligning his family with the Massachusetts State Police annually to organize charity walks from Boston City Hall Plaza to Boston Children’s Hospital, a CF patient-care facility, along with Massachusetts General Hospital. The walk served as the prototype for subsequent larger fund-raisers, including the Great Strides to Cure CF, a national charity walk that helps raise millions every year for the Cystic Fibrosis Foundation.
Nearly half a century ago, Cystic Fibrosis was still a mystery to many, at a time when young children fell victim to drowning coughs and short life spans, many of them not reaching high school age. The genetic disease affected about 40,000 people in the United States, and young ambassadors were needed to help educate the community and lead the call for action, and Brian was the right young man at the right time.
Brian was thrust into the role of ambassador to represent those who fought the disease, and would frequently be interviewed by news reporters, using his charisma to bring together an extended family and instilling in them a heartfelt desire to help. Surrounded by State Police officers, local television celebrities and armies of volunteers, Brian shone in the spotlight. His extended family of more than 15 aunts and uncles and more than 30 cousins who helped bolster his charity campaigns at walks, bowl-a-thons, movie premiers, casino nights, and dozens of other CF fund-raising efforts.
In 1983, Brian filmed a television commercial with Boston Bruins legend Bobby Orr to promote the walk and lead education efforts. Brian’s smile and effortless communication skills helped make everyone involved with the advertisement feel as though they were the ones in the spotlight.
Early on, Brian did not expect to survive into his teenage years, but still approached life and the obstacles placed before him with humor and boundless courage. When he defied the odds and reached his teens and then ensuing years, he launched careers with Virgin America Airlines and the Copley Marriot Hotel, before his career took flight as a Boston realtor, learning the business from his aunt, Suzanne Long McInerney. With his proactive approach to developing business, coupled with his passion for the “art of the deal,” Brian established himself as a top realtor and producer in Boston/Cambridge Coldwell, earning the distinction of being inducted into Coldwell Banker’s International President’s Circle Award, as well as the President’s Elite Club, which recognizes the top 2% of affiliated associates worldwide.
In later decades, as Brian’s disease advanced, it become apparent a lung transplant was going to be needed to keep him alive. With astounding bravery, Brian received a double lung transplant 14 years ago, providing him with a new lease on life, one which he would embrace with great gusto.
Travel, yachting where possible, and enjoying life with his friends and family, were his greatest life pleasures, and Brian always lived every day as it was his last, encouraging others to do the same.
Today, people afflicted by this terrible disease are surviving decades longer than ever before, thanks to courageous people like Brian who frequently volunteered for clinical studies said Terry Waite the CF Chapters’ Senior Development Director. His bravery enabled others to come forward to tell their stories and make life-changing differences for other children. Therapies like Trikafta, approved by the Food and Drug Administration in October 2019 have helped people with CF the opportunity to live significantly longer and healthier lives.
Former CF Board Member Arthur Bourque said “It is fair to say that Brian’s upbeat attitude and the family commitment to fighting this disease were directly responsible for raising millions of dollars to fund the incredible research that has been accomplished. That research has resulted in new treatments and medical protocols that have greatly improved the survival rate and lifestyles of those afflicted with cystic fibrosis. Many CF patients are alive today as the direct result of Brian Long and his battle with this disease.”
Brian could be considered an old soul, despite his young years. His extraordinary impact on the lives of those who knew him and even those who didn’t, will be remembered forever. Always an ambassador for the Cystic Fibrosis Foundation, with each birthday, Brian hosted a fundraiser with funds matched by him and his life partner Ed Feijo for research. Brian was also a supporter of the Cambridge Guidance Center and the Toys for Joys program.
The family would like to personally thank Brian’s close and dear friend Connor McAllister, who helped provide great care, love and support to Brian through his most difficult times.
Brian also leaves many aunts and uncles, including William P. and Nancy Long of Irvine, CA, Francis X. and Kathleen Long of West Newbury, Ed and the late Gervaise Long Haley of Hull, Susan Long McInerney and Curt Anderson of Weston, John and the late Valerie Long Cooper of Derry, N.H., Tom and Mary Jeanne Long Kuehn of Tustin, CA, Madelynne Long Mahoney and Danny Mahoney of West Boylston, Jacqueline Starrak and Tom Gardner of Canton M.I., Jose and Virginia Long Martins of Southboro, Jean Claude and Madelynne LeComte of Quebec, Canada, and Janine, Norman and Francine LeComte, and their families all of Quebec, Canada.
He also leaves his nieces and nephews, Bobby and Sarah Long, Nicole Fontenault, Heather Maffeo, Maddison and Bronwyn Axford, and Stella, Valerie and Adeliza Jenness. He leaves his cousins, Patricia, Christopher and Griff Long, Courtney Ragan, Mary Patricia Long, E.J. and John Haley, Gervaise Calos, Arianne Getz, William, Eric and Amy McInerney, Erin Smith, Mark Cooper, Gabrielle Yates, John Kuehn, Lyndsey George, Amanda Bell, Kerry Belafonte, Kevin and Michelle Mahoney, Carly Tomfohrde, Kelley Mandel and Paige Phillips. He was predeceased by his cousin William Long.
Services will be private, Arrangements are being managed by the J.S. Waterman Langone Chapel of Boston
In lieu of flowers and in what Brian would consider an honor to his lasting legacy of courage and perseverance, donations can be made in Brian’s name to the Cystic Fibrosis Foundation at