This is an all-too-common question of people living with the devastation of an ALS diagnosis. While researchers are still working to understand the exact causes of ALS, it is known that some cases are caused by a genetic variant.
To unravel and enhance our understanding of the genetic component of ALS, Project MinE was founded in 2013 by Robbert Jan Stuit and Bernard Muller, two entrepreneurs living with ALS.
Project MinE is a multi-national initiative with more than 15 participating countries. It is mapping the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to understand the genetic signature that leads someone to develop ALS.
By accumulating such a large amount of data that no one country could achieve alone, it is expected that Project MinE will identify new genetic causes of the disease that will significantly accelerate our ability to advance treatment possibilities that will slow down or stop ALS.
Canada has become the 17th country to join this international research partnership. ALS Canada is leading Canada’s fundraising efforts for Project MinE to support the mapping and analysis of DNA profiles.
Our goal is to contribute up to 1,000 DNA samples to the initiative.
To date, we have provided more than
The Canadian component of Project MinE brings together four of Canada’s leading ALS geneticists in Vancouver, Toronto, Montreal and Quebec City for their first ever cross- country collaboration.
Each of the participating researchers has led or been part of international consortia that have resulted in some of the most important genetic discoveries in the field. They also represent a geographical balance that would provide a collaborative set of Canadian samples representative of ALS cases across the country.
ALS clinics who are contributing to Project MinE and have collected the samples being used for the initiative:
I think of others who will come after me and like me, lose the bloom of their health so insidiously. Project MinE could help to make things better for them.
Chris McCauley • ALS Canada ambassador for Project MinE, social worker, policy research analyst and ALS patient
Months after celebrating his first wedding anniversary in 2014, Chris McCauley noticed some unusual twitching in his arms and legs while vacationing with his wife in Costa Rica. Shortly thereafter, he was diagnosed with ALS at the age of 52. “Instead of looking forward to establishing a home and thriving in career and community, we were doing our best not to deny the opposite reality,” he said.
After his diagnosis, Chris – a policy research analyst and social worker – became keenly interested in ALS research. Given the multiple causes, numerous disease pathways, and the different ways and rates at which ALS progresses and the variations in survival, he was struck by the immense challenges researchers face in developing a treatment or cure for the disease.
To Chris, the promise of Project MinE is tremendous as it will make ALS easier to study and has great potential to lead to effective treatments. He brought his voice to Project MinE in Canada to help make things better for people who will be diagnosed with ALS in the future. As he put it, “l think of others who will come after me and like me, lose the blossom of their health so insidiously. I want to do something to make it better.”
Chris served as ALS Canada’s ambassador for Project MinE until his death in August 2017.
