ORONO, Maine — While the Parent Project Muscular Dystrophy Golf Scramble fundraiser was held Friday at Penobscot Valley Country Club, all associated with the event agree that raising awareness was more important than raising money.
“This is in memory of John [Bishop], but the cause is most important,” said Pat Bishop, John’s wife.
The particular cause is Duchenne muscular dystrophy, which strikes young children, including their grandson Jack. It usually manifests itself before the age of 6.
“After John’s retirement [as vice president of the Bangor Daily News in 2003], he was committed to Jack,” said Pat. “He was a chemist, and he could help our daughter understand what was going on.”
The disease, which is usually inherited, is a disorder involving rapidly worsening muscle weakness.
“It starts in the legs and works up to the heart and lungs,” said Pat.
Sufferers rarely live beyond age 30, according to a report at Pharmacy Europe, an online resource for hospital and clinical pharmacists.
“It’s a nasty disease,” Pat said.
It also afflicts boys almost exclusively. Most parents don’t realize a child has the disease until symptoms crop up.
“When children are born, there is no testing. They could do it when they do other blood tests. The only way you become aware of it is when children start falling down, usually flat on their face,” said Pat. “They go to the doctor and get a blood test. It’s a very simple test.”
There is no cure, but people are working on unlocking the keys to the disorder, including Jackson Lab in Bar Harbor, the Maine Institute for Human Genetics and Health in Brewer and the University of Maine.
Those are the three groups which will benefit monetarily from the net proceeds, but when it was explained that all they might get out of it was public awareness, they were happy to get even that, according to event co-organizer Skip Chappelle.
The tournament’s mission, according to its brochure, is “to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.”
Roger Tremblay, director of operations at Northeast Publishing Co. in Presque Isle, knew it would be difficult to make money with the first-time event.
But, he said, “Any time I questioned myself [about all of the time and effort he was putting into the event], I thought of the two goals of the tournament, to memorialize John [Bishop] and aid the cause of his grandson.”
Bishop was Tremblay’s former boss and mentor at Northeast Publishing before Bishop became vice president of the Bangor Daily News. Bishop, who retired from the BDN in 2003, died of apparent heart failure on Dec. 30, 2008.
Tremblay and former BDN vice president of community relations Chappelle decided to memorialize Bishop, who had often played golf with Chappelle, with a tournament.
Twenty teams, about 80 people, took part Friday.
“We’re very pleased with it,” said Chappelle of the turnout.
Friday’s event also coincides nicely with another event taking place around the country today, the Coach to Cure MD program.
“More than 200 schools and 2,675 coaches [around the country] are taking part,” said Chappelle, including the University of Maine, Husson University of Bangor, Bowdoin College of Brunswick and Colby College of Waterville.
If that helps Pat Bishop, her daughter Amanda and grandson Jack, now 5, get the word out, she will be happy.
“A lot of kids in Maine have it, but not a lot of people know about it,” Pat said.
Approximately one in 3,600 male infants is afflicted. By age 12, most are confined to a wheelchair.
“These boys have no voice. They live a very isolated life,” she said. “We have so much [to face] down the road, and John was our rock.”