This year’s Fourth Annual I.M Rare and Aware Skate-A-Thon in Espanola was a huge success, with over $53,000 raised.
Alex and Kelsey McKechnie’s daughter, Iris Mae, has Pompe Disease, a genetic condition in which a complex sugar builds up in body cells.
Kelsey says her daughter’s condition is controlled through weekly infusions, but the family wanted more research into the disease, so they founded the event four years ago.
She says the funds from this year’s event were presented to the Pompe Research Team at McMaster University in Hamilton last week.
She adds that Dr. Mark Tarnopolsky and his team will be making a submission to the research ethics board to proceed with a study to advance research and the delivery of medication for Pompe patients.
Kelsey says if all goes well, the study will take place this year, and the published results will acknowledge the donation from the fundraiser.
Of note, $13,000 of the funds raised came from a raffle hosted by the Espanola Lions Club, with the rest raised through local donors and the sale of related merchandise.
