Donation

The Canadian Organization for Rare Disorders (CORD) wants to express a huge thank you to the Espanola Lions Club and Kelsey McKechnie for their fundraising efforts and generous donation. 

Kelsey McKechnie, parent of Mae who is diagnosed with Infantile Onset Pompe Disease, organized a Skate-a-thon event to celebrate Rare Disease Day and Pompe Awareness. Kelsey is connected with the Espanola Lions Club which ran the raffle to support CORD’s charitable activities. The supportive and generous spirit of the town of Espanola is much appreciated. 

This generous donation from the Espanola Lions Club and the McKechnie family will allow CORD to continue to make a significant difference to improving the lives of Canadians living with rare diseases. Indeed, it comes at a very opportune time. For nearly two decades, CORD has been developing and advocating for a national plan for rare diseases. This March, the federal government announced Canada’s first Rare Disease Drug Strategy, and CORD will play a leading role to helping ensure that the strategy is comprehensive and includes screening and diagnosis, access to specialists and centres of expertise, access to community support including patient organizations, timely access to treatment, research and development, including clinical trials and new technologies.

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on February 28 (or 29 in leap years)—the rarest day of the year.

To learn more about Pompe Disease visit pompecanada.com  

Pictured: Kelsey, Alex, and Iris Mae McKechnie