Amyotrophic Lateral Sclerosis (ALS) Fact Sheet

ALS and The Montreal Neurological Institute (MNI)

About ALS

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is a devasting neurodegenerative disease affecting between two and five people per 100,000. Approximately 2,500 - 3,000 Canadian adults currently live with ALS. 80% per cent of people with ALS die within two to five years of diagnosis. The major symptoms of ALS are muscle weakness and wasting progressively worsening to the point of paralysis and inability to breathe. These symptoms result from the death of motor neurons, nerve cells in the brain and spinal cord that control movement of voluntary muscles. (source www.als.ca )

MNI and ALS research and treatment/initiatives

The Montreal Neurological Institute and Hospital is committed to the highest level of care for patients and families with ALS through a dynamic program that encompasses exceptional clinical care, clinical research and basic science research. In addition to active research into the fundamental biology of ALS, the effort to find effective treatments continues. The MNI's multidisciplinary ALS clinic was formalized in 1998 under the direction of Dr. Angela Genge and it is recognized as a leader within Québec, Canada, and the world in the delivery of care to this very special patient population. It is considered a model program for multidisciplinary clinics throughout the McGill University Health Centre (MUHC) and beyond.

Dr. Genge leads an important clinical research program that is run in conjunction with the Clinical Research Unit of the MNI, which she directs. The MNI is participating in major national and international multi-centre drug trials to identify more effective treatments/ leading the development of clinical trials with new therapies and combination therapies along with collaborators in Quebec and internationally.

The team of scientists at the MNI and McGill laboratories is forging local, national and international partnerships in order to propel and advance research into the potential causes of ALS and development of effective treatments. These initiatives are led by Dr. Heather Durham and Dr. Stefano Stifani, with projects being developed by Dr. Alain Ptito, Dr. Amit Bar-Or, Dr. Hugh Bennett and Dr. Andrew Bateman.

Dr. Durham's lab at the MNI conducts studies in order to understand how the normal function of motor neurons makes them particularly vulnerable in motor neuron disorders such as ALS, and to develop therapies that activate cellular stress responses to fight disease. In addition to her lab's efforts, they have ongoing initiatives with Dr. David Burns in the Department of Chemistry at McGill to investigate new methods to identify biomarkers of ALS in blood samples and with the group of investigators at the CHUM led by Dr. Guy Rouleau to develop a Montreal ALS Research Alliance. Dr. Durham also is working at the national level to further leverage ALS research initiatives, being a member of the Board of the ALS Society of Canada. As Chair of the Research Policy Committee for the ALS Society, she recently accepted the Partnership Award of the Year on their behalf awarded by the CIHR Institutes of Neuroscience, Mental Health and Addiction (INMHA).

Dr. Stefano Stifani is conducting cutting-edge research focused on motor neuron generation, muscle connectivity, and regeneration. His lab has made important strides in understanding the intricate mechanism of how motor neurons develop. The ultimate goal of his program is to provide strategies to manipulate neural stem cells and facilitate the design of approaches that may promote the repair of the adult nervous system in response to trauma or disease. Dr. Stifani recently published an important study in the journal Proceedings of the National Academy of Science USA identifying a key factor in the steps toward motor neuron development. Those results have important implications for the function and repair of the nervous system.

ALS and community support

The ALS Society of Quebec, established in 1983, provides support for individuals living with ALS and their families, creates awareness, and raises funds for patient services and research. The ALS Society of Quebec works in partnership with the other provincial agencies and the ALS Society of Canada.

The Fondation André-Delambre was created in October 2003 when André Delambre, a businessman well-known in artistic circles, was diagnosed with ALS. The foundation was set-up to assist patients and their families and to support research, including a clinical fellowship at the MNI. Danielle Lavoie, a medical doctor and current Andre-Delambre fellow is designing protocols for clinical trials and working on treatments for ALS.

About the MNI

The MNI is a McGill University research and teaching institute, dedicated to the study of the nervous system and neurological diseases. Founded in 1934 by the renowned Dr. Wilder Penfield, the MNI is one of the world's largest institutes of its kind. MNI researchers are world leaders in cellular and molecular neuroscience, brain imaging, cognitive neuroscience and the study and treatment of epilepsy, multiple sclerosis and neuromuscular disorders. The MNI, with its clinical partner, the Montreal Neurological Hospital (MNH), part of the McGill University Health Centre, continues to integrate research, patient care and training, and is recognized as one of the premier neuroscience centres in the world. At the MNI, we believe in investing in the faculty, staff and students who conduct outstanding research, provide advanced, compassionate care of patients and who pave the way for the next generation of medical advances. Highly talented, motivated people are the engine that drives research - the key to progress in medical care. A new building, the North Wing Expansion, is currently under construction and will house state-of-the-art brain imaging facilities. Once the construction is completed and the new building is fully equipped, the scientific community focused on brain imaging research at the MNI will be without equivalent anywhere in the world. For more information, please visit www.mni.mcgill.ca.

Media Contact:

Anita Kar, Media Relations, Montreal Neurological Institute, (514) 398-3376, anita.kar [at] mcgill.ca