An Overview of the ALS Canada Research Program

Contact: Dr. David Taylor, Director of Research, 905-248-2052 ext. 202, @ALSCanResearch

Q:           What is ALS Canada’s role in ALS Research?

A:            ALS Canada is the sole national non-profit organization providing research funds for ALS researchers across Canada. As part of our charitable purpose, our vision is to make ALS a treatable disease. To fulfill this vision ALS Canada administers and funds a National ALS Research Program. 

Q:           Does ALS Canada conduct research?

A:            ALS Canada does not conduct research. ALS Canada has a strong relationship with the world-class community of ALS researchers in Canada and works with them to develop crucial research grant opportunities that will have an impact on making ALS a treatable disease.

Q:           How does the ALS Canada research program work?

A:            The ALS Canada  Research Program is based on a grant model where each grant serves different purposes. Please find a description of our grant program below describing what each grant is used for:
                
Arthur J. Hudson Translational Team Grant (new in 2014):  provides $1 million to the top team of ALS researchers from at least two different Canadian universities. Teams must include a neurologist presently seeing ALS patients. Emphasis is on translational research that pushes discovery of potential treatments out of the laboratory and into the clinic for testing.

Bridge Grants:  $100,000 grants for one year to sustain momentum on top peer reviewed ALS research that didn’t achieve full government funding. Government grants for multiple years of funding (through the Canadian Institutes of Health Research or CIHR) are only awarded to the top ~18% of all health research projects in Canada. It also keeps top scientists focused on ALS research rather than seeking out funding to work on other diseases.

Discovery Grants:  $100,000 grants for 1-2 years to nurture a foundation of research for the top novel, “outside-the-box” projects designed towards understanding ALS, diagnosing the disease earlier or developing treatments. These novel ideas often have difficulty securing funding from other agencies and don’t get a chance to be pursued otherwise.

Clinical Research Fellowship: $100,000 per year for 2 years to train a young neurologist to specialize in ALS research and care. This is designed to help build stronger capacity across Canada for running clinical trials, which bring the best new experimental therapeutics to Canadians, and providing the specialized care of an ALS focused neurologist. It has also helped to bring specialized ALS care to underserviced regions of Canada.

Postdoctoral Fellowship: $55,000 per year for 3 years to support a postdoctoral researcher doing a top peer reviewed project on ALS. Trainee awards are designed to bring brilliant young minds into the ALS field.

Doctoral Award: $35,000 per year for 3 years to support a PhD student doing a top peer reviewed project on ALS.

Young Investigator Award: (in development) will be designed to assist the top postdoctoral researchers in obtaining and sustaining an Assistant Professor position at a Canadian research institution (university). It is an effort to keep the brightest young ALS researchers as contributors to the Canadian ALS research community and most importantly to remain focused on ALS.

ALS Canada Research Forum: a non-grant piece of the Research Program that brings the entire Canadian ALS research community together annually for sharing of ideas and forming new collaborations. This event has been widely cited as a major contributor to the uniquely cooperative nature of the Canadian group, which has helped nurture the strong contribution of Canada to the global effort of ALS research.

Q:           How does ALS Canada decide what research to fund?

A:            The ALS Canada Research Program is based on peer review. This means, that the applications for funding we receive from Canadian ALS researchers are evaluated and ranked by other researchers based on their likelihood to move the ALS research forward in line with our vision of making ALS a treatable disease. In 2014, for the first time, ALS Canada has enlisted an International Peer Review Panel consisting of seven world-class ALS researchers who will evaluate and rank applicants to ensure donated funds will support the best ALS research possible. 

Q:           Does the research ALS Canada fund, use human embryonic stem cells in their research?

A:            We do not fund any ALS research that use human embryonic stem cells, nor have we ever funded any research involving human embryonic stem cells.

Q:           Is it true that ALS research has not made much progress?

A:            In fact, ALS research is at a time of unprecedented excitement and momentum. Many of the top researchers in the world believe we are now positioned to find treatments that can significantly alter the course of the disease in the foreseeable future. In 1993, ALS research had a major breakthrough by discovering a gene in the lab that can cause the disease in a small number of cases (9 out of 10 cases are not passed on within families). This gene allowed us to study the disease in a new way in the laboratory, but it represented just one piece of a very complex puzzle. Researchers worked hard and learned a lot over the next decade until technology allowed for discovery of a second major puzzle piece in 2006. Since then, we have discovered nearly all of the important puzzle pieces and perhaps the most prominent in late 2011. In essence, ALS research has come further in the past 5-7 years than in the previous century. Combined with a constantly increasing technological capability, researchers are working in the laboratory to put the pieces of the puzzle together to understand ALS and develop new treatments. There are more ideas and important projects to be accomplished than funding will allow so any donation of any amount will make a tremendous difference to sustain the momentum in ALS research.

Q:        How good are Canadian ALS researchers?

A:         Last summer, ALS Canada assessed where Canadian ALS research stands in terms of impact on the field of ALS and it was clear that Canada is one of the top five countries in the world in this respect. Canadians’ impact has also grown at a faster rate of the past decade than any other country in the G8. This means that as Canadians have invested in ALS research here, it has correlated into us being more important towards the global effort to understand the disease and find new treatments. Our group is collaborative and internationally respected. In addition, a number of the biggest breakthroughs made over the past three decades have come from Canadian labs, the second multidisciplinary ALS clinic in North America was in Canada and we have a strong network of ALS clinics across the country that are involved in bringing the best international clinical trials here. ALS Canada’s focus on translational research will ensure that the best research contributing to achieving our vision of making ALS a treatable disease, will be funded.