By Jeff Gard, Northumberland Today
COBOURG — A fundraiser will be held “at home” for a local foundation, and the disease it supports, which has gained national and international attention.
Formed in 2006, The Isaac Foundation was created to fund innovative research projects that aim to find a cure for MPS VI (Maroteaux Lamy Syndrome). MPS VI is a rare, progressive disease that affects only four children in Canada.
Six-year-old Isaac McFadyen of Campbellford is one of them. Symptoms include stiffening joints, stunted growth, heart and airway disease, spinal cord compression and a shortened life span.
The Isaac Foundation will host its first Gala for a Cure on Oct. 1 at the ballroom at the Best Western Cobourg Inn and Convention Centre. In the past they’ve hosted golf tournaments (usually near Kingston) and other events, many times initiated by people wanting to support the cause.
“I think it’s now time to do more stuff at home,” said Isaac’s father, Andrew McFadyen, who is a director for the foundation. “We’ve been going for six years on the foundation and we like to continue to rejuvenate ourselves and hold different types of events.”
Tickets for the gala, which will include wine tasting by Black Prince Winery, dinner, an intimate performance by Canadian singer/songwriter Ron Sexsmith and a silent auction, are on sale now.
Tickets are $100 and include a charitable tax receipt of $60. They can be purchased by contacting Ellen Buck-McFadyen at 705-632-0983 and email@example.com . Tickets are also available through Marcy Berg at Mortgages for Women in Cobourg, and at The Eclectic Mix in Warkworth.
Andrew McFadyen was thrilled to announce Sexsmith was added to the gala lineup.
“I’m excited that we get to treat our guests to the music of Ron Sexsmith,” he said. “It gives us a boost with our fundraising efforts and really helps us pave the way for a successful event.”
Sexsmith isn’t the only musician to lend a hand to The Isaac Foundation. Both John Mayer and The Tragically Hip have donated signed guitars to be auctioned off at the gala. The charity has an excellent relationship with Mayer, who raises awareness of the organization during his concerts and on his website and meets with young Isaac prior to his Toronto shows.
The Tragically Hip have regularly attended other Isaac Foundation events.
Isaac’s story first garnered national attention in 2006, when the McFadyens lobbied the Ontario government to fund treatments for Isaac. While there is no cure for MPS VI, a type of Enzyme Replacement Therapy (ERT) called Naglazyme was approved in the United States in June 2005. The cost for treatment, though, runs between $300,000 to $1,000,000 per year.
Elizabeth Witmer, who was the Conservatives opposition health critic at the time, invited the McFadyens twice to the Ontario Legislature. And in July 2006, the family received word from then-minister of health George Smitherman that the provincial government would fund Isaac’s ERT treatments.
“Without treatment, there wasn’t any hope,” McFadyen said. “Our Liberal government had the chance to alter the life of my son.”
McFadyen ran last year to become the local Liberal MP candidate for Northumberland-Quinte West (which was won by Kim Rudd). He gives credit to members from two parties for the funding of Isaac’s treatment.
While they’re thankful for the work of the Liberals’ Smitherman and local MPP Lou Rinaldi, the family is indebted to the lobbying of Witmer, who’s expected to be in attendance at the gala as well.
“Every milestone Isaac reaches, I still send her a picture of him,” McFadyen said.
Research for this ultra-rare disease can cost about $100,000 each year to run one project with one researcher full time, McFadyen pointed out. The goal of the foundation is to just raise as much money as possible.
“We’re proud of the fact 97% of the money that comes in goes right toward research,” McFadyen said.
For more information, check out The Isaac Foundation website at www.theisaacfoundation.com.
Watch for more about Isaac’s story.