About

Toronto Launch

My Normal launched in 2013 with a colourful display at the Lysosomal Disease Network WORLD Symposium in Florida and at a special Rare Disease Day event, hosted at Mount Sinai Hospital, Toronto, with the Mark Freedman and Judy Jacobs Program for Gaucher Disease. A 2011 Genzyme Patient Advocacy Leadership Award (PAL Awards) provided the initial seed funding to turn the My Normal project idea into reality.

The My Normal Project aims to break down the feeling of separation that people who live with a rare disease may face, when they sense that their stories are not for sharing, as they aren’t part of a normal experience. 

My Normal promotes a diversity of storytelling voices to spread new awareness, understanding, and hope about living with a rare disease.

Emma's Garden: Growing with Gaucher was the first story to come out of the My Normal project. The 10 minute digital story was created with the intention to inspire others to share their childhood stories of growing up with a rare disease.  

My Normal is a creative initiative supported by the National Gaucher Foundation of Canada. Gaucher disease is a rare genetic condition, the most common of the group of diseases called lysosomal storage disorders. Formed in 1991, the NGF of Canada’s mission is: 

To improve the health and well-being of Canadian patients living with Gaucher through community building, education, advocacy, and support of research