Sponsors and participants at Canadian automotive aftermarket’s leading charitable fundraiser, Shad’s R&R, soldiered through pouring rain and unseasonal cold to raise $150,000 for research into a cure for muscular dystrophy.
Celebrating its 46th consecutive year, the industry charity event has raised nearly $5.2 million for the cause over the years.
The conditions for the golf tournament were relentlessly wet and only a handful of foursomes finished a full 18 holes, but this did not dampen the giving.
On hand to receive this year’s contribution was Barbara Stead-Coyle, CEO of the Muscular Dystrophy Association of Canada (MDAC) who gave the attendees the ground-breaking news that a “miracle drug” Spinraza had just been approved for coverage in Ontario the day prior to the event.
The drug, which had been previously approached in some other provinces, has provided patients and parents of those with muscular dystrophy and has helped force back the effects of the spinal muscular atrophy, a form of muscular dystrophy, but at a cost of more than $100,000 per dose and with six required per year, was prohibitively expensive.
“Little Zoe was diagnosed with spinal muscular atrophy when she was about one and a half. Her parents very quickly saw her not being able to walk. And starting to crawl and pull herself because her legs and her hips and her thighs and her feet wouldn’t work anymore. Zoe got put on the trial for spina muscular atrophy. Zoe is now three and we got an email from Zoe’s mother the other day saying ‘Zoe climbed a mountain in British Columbia because she’s had Spinraza treatments.’”
She said that research is making tremendous strides and that a cure is at hand.
“I can tell you dear friends that the end is near. We are actually seeing more treatments and more trials and more hope and more promise. There are gene therapies where people are going in and changing people’s genes so that muscular dystrophy is gone from their bodies.
“We are on the cusp of something remarkable and we wouldn’t be here without all of you.”
Danielle Campo McLeod, a multiple Paralympic medalist and mother of four also told her story to attendees. Growing up in a sports focused family, she began early on to show signs of MD in 1987 when she was three.
“For my family, they describe that moment as life stopping and life crushing because in 1987 that meant life was going to very short.”
Her story is one of resilience and challenge and continual progress in treatments and therapies. She found her freedom in the water, and trained hard to win a succession of paralympic swimming medals through her teens and now, her competitive swimming years behind her, she works as director of program development for MDAC.
Fighting against odds, she was able to give birth her first child three years ago (her two eldest are from her husband’s previous marriage), and seven weeks before the Shad’s R&R tournament, gave birth to her second.
“My job is one of the greatest jobs in our agency and across the country. I get to come and say thank you. I get to say thank you because bouncing at the side the room is my second child. It’s a miracle but its because each and every one of you coming out and taking the time to raise money that I can say on behalf of everyone in Canada who is living with a neuromuscular disorder. When a parent hears now that their child has muscular dystrophy they can say ‘So how do we fight in?’, ‘What can we do?’. No parent is stopping right now and saying ‘Oh my god, my son or daughter is going to die.’
“Because you give is the ability to dream big. It’s because of you. It’s because you take the time to continue. I thank you and I thank your families. There is no end date to my journey. We don’t know when it’s going to happen.
“I walked into a doctor’s office last year to hear ‘Danielle, you’re not going to die of muscular dystrophy. You’re going to die probably of the same things that all of us die from, but it won’t be muscular dystrophy. I get to dream and live a whole life with my children and my family because you guys come to a golf tournament. Because you guys keep fighting.
“On the days that muscular dystrophy steals my joy, you put it back because I know that you’re not going to stop fighting until we find a cure.”