Collaboration behind ALS Research
In the field of research, collaboration is key. Many ALS research projects have resulted in important discoveries, thanks to this interaction. Therefore, the ALS Society of Quebec is proud to support Quebec’s initiatives that aim to encourage exchange between today’s and tomorrow’s researchers, all over the world.
On September 27, 2016, many researchers, clinicians and students gathered in an informal setting in order to share their projects and ideas in ALS research during the very first ALS Research Network meeting, initiated by Dr. Christine Vande Velde and Dr. Angela Genge.
“In the last few years, ALS researchers have been collaborating more and more. As a result, we have made significant findings. I think in my lifetime we will discover a therapy to treat ALS. We’ll finally get it. The therapy might not benefit all patients, but it will be a start.”
When he helped spearhead the organization of the first ALS Annual Symposium on behalf of the Fondation André Delambre in 2005, Dr. Jean-Pierre Julien was hoping for an international collaboration to emerge from this event. Twelve years later, he thinks he achieved this goal.
“Since 2005, nearly 300 guest speakers coming from 14 countries have taken part in these encounters. One particular thing about this symposium is that the friendly environment encourages participants to discuss the unpublished results of their research projects. ALS is a complex disease and the collaboration between experts is essential in trying to understand both molecular and cellular mecanisms involved.”
Dr. Dupré studies the genes linked to ALS and other motor neuron diseases. Mapping these mutant genes will significantly advance treatment that could slow down or stop the disease.
“I am very excited by advances in genomic research which is allowing us to create motor neurons in the lab. By using skin samples from those with ALS we are able to recreate motor neurons with the same genetic background. This is helping us gain a better understanding of the degeneration of motor neurons and will eventually open the door to new therapies and treatments and diagnostic methods for ALS.”
Dr. Genge’s research focuses on testing new ALS treatments in clinical trials to improve the quality of life of people living with ALS.
“2017 promises to be a huge year with a variety of new clinical trials. Plus, many medications currently in the review process are showing a lot of promise. We’ll be going to Health Canada for approval soon. Also, the Neuro will be the first Open Science institute in the world. Starting in 2017, research data will move freely between research teams. The aim is to speed up discoveries of all neurological diseases with ALS at the forefront of this initiative.”
Dr. Drapeau studies zebra fish with mutant TDP-43 or FUS genes that causes them to develop a disease which mimics human ALS. In fact, Dr. Drapeau discovered the drug Pimozide slows down ALS in fish.
“We are about to publish the promising results and in early 2017, phase two clinical trials will get underway. Worldwide, a number of clinical trials are underway to test the effectiveness and safety of various ALS treatments. Within a year or two, several new medications should be available. These treatments will improve the quality of life of those living with the disease.”
“For those of us with ALS, we keep hoping, every second, that researchers will find a way to extend our lives and ultimately save us.“
-Michel Tremblay, ALS patient, Montérégie
Since the Ice Bucket Challenge became a social media phenomenon in 2014, nearly $20 million has been invested in Canadian ALS research at a time when it has the potential to make the greatest impact. Significant progress in ALS research is being made — researchers now believe that finding effective treatment options for ALS is now a matter of “when,” not “if,” and that research discovery is limited only by the amount of funding available to pursue it.
As just one example of a recent development in ALS research, July 2016 saw researchers announcing that the gene NEK1 has been found to play a significant role in the development of amyotrophic lateral sclerosis (ALS). This landmark discovery is the result of an 11-country research collaboration that was funded through the Ice Bucket Challenge. The research team included 3 Canadians, one of whom was directly funded by the ALS Canada Research Program for their work during this discovery. This finding will trigger future studies that focus specifically on the NEK1 gene.
Investing with Integrity
The ALS Canada Research Program invests in the best science in order to pursue our unwavering commitment to make ALS treatable, not terminal. Decisions about which projects to invest in are made through a peer review panel, which is the international standard of excellence for research funding. This process provides an objective assessment on the best science that is most able to advance the field.
Thank you for your continued support of the ALS Canada Research Program. It is because of your generosity that we can continue to make significant investments in the research that is needed to make ALS treatable, not terminal.