The Mitochondrial Disease Journey and the Road Ahead
(scroll down for video timestamped agenda)
The MitoCanada Foundation was formed in 2010 to raise awareness, support patients, families and caregivers, and fund research for mitochondrial disease. The Rare Disease Network of Alberta (rDNA) was formed in 2018 to help people understand more about rare diseases and connect the Alberta rare disease community.
Together, as part of Mitochondrial Disease Awareness Week 2019, we hosted a mitoTALK at the Calgary Central Library to educate the public about the exciting progress being made and road ahead to find a cure!
Speakers discussed current research and what the future looks like in terms of innovation and the development of therapies and treatment. In this video you will hear from patients about their experience living with a rare disease and Calgary scientists and clinicians who are on the cutting edge of genetic research.
AGENDA AND VIDEO TIMESTAMPS
0:00:00 - Blaine Penny, CEO MitoCanada, “Global mitochondrial disease awareness week and the impact of patient advocacy”.
0:16:10 - Dr. Aneal Khan, President of Rare Disease Network of Alberta (rDNA), Professor of Medical Genetics and Pediatrics, Alberta Children’s Hospital Research Institute, Cumming School of Medicine, University of Calgary, Metabolic Diseases Clinic, “A mitochondrial success story: grass roots efforts from patients and their families and the progress achieved in Calgary”.
0:49:47 - Dr. Timothy Shutt, Assistant Professor, University of Calgary, “Identifying and characterizing novel mitochondrial disease genes and mutations”.
1:18:07 - Lived Experience: Tanner’s Journey told by his mother Leeanne.
1:36:20 - Patient Oriented Research – Sandra Zelinsky, Patient Co-Investigator, Patient Research Partner, “An Overview of Patient Oriented Research”
2:10:38 - Mito Challenge – An exciting challenge on how you can make a difference during Mitochondrial Disease Awareness Week (Graham Sherman, Motivational Speaker and co-founder of Tool Shed Brewing Company).
