Researchers from around the world gather in Montreal
When he helped spearhead the organization of the first ALS Symposium on behalf of the Fondation André Delambre ten years ago, Dr. Jean-Pierre Julien hoped to do more than simply gather like-minded researchers for two days of speeches and presentations. The goal was to touch off a flight of enthusiasm for international cooperation among top-flight scientists who had dedicated themselves to knocking down the walls of ignorance around amyotrophic lateral sclerosis (ALS). The inaugural symposium, held at the Montreal Neurological Institute and Hospital in September 2005 set in motion an exchange of ideas and establishment of academic alliances that continue to this day.
The moving force behind the first Symposium was André Delambre, the accountant who became famous as financial consultant to Quebec impresario René Angélil and international singing superstar Céline Dion. Mr. Delambre turned his great store of energy and professional expertise to ALS support and research after he himself was diagnosed with the neurodegenerative disease in 2002. He was immediately struck by the lighting speed with which the disease progresses, and how the needs of those afflicted and their caregivers quickly surpassed the capacity of the health system. Mr. Delambre decided to involve himself and joined the Board of Directors of the ALS Society of Quebec. He saw for himself the financial burden the ALS Society shoulders as it strives to champion those afflicted by the disease and their caregivers. He prepared himself for the next step in his journey through the establishment of the Fondation André-Delambre. The organization’s two-pronged mission: to assist ALS sufferers and their caregivers in obtaining the services available to them and to stimulate research.
Celine Dion headlined gala to support Fondation André-Delambre
Mr. Delambre began by enlisting the support of his friend, and now his employer, René Angélil, who, with others friends, helped organized a gala evening at the Bell Centre, with a dinner and a special concert headlining Celine Dion. The event garnered the Fondation André-Delambre its first million-dollars. The question now arose: how best to invest the funds raised by the foundation.
Mr. Delambre approached Dr. Jean-Pierre Julien at Université Laval, whose recommendation came quickly. The leading ALS researcher proposed the now-well-established symposium.
“We didn’t know if it would work,” says André Delambre’s son, Dominic. “There’s a lot of competitiveness among universities,” he noted. But any such fears were calmed as the first ALS symposium got rolling. Its supple organization and informal style fostered true collegiality. “It was a near-instant success,” says the younger Delambre, an accountant like his father and current Treasurer of the ALS Society of Quebec and of the Fondation André Delambre. “People from Japan, Europe and all across the planet came together to create real synergy.”
Best international meeting on ALS
The Fondation André-Delambre Symposium on ALS is returning to its roots for its 10th edition, being held on September 19 and 20 at the Jeanne-Timmons Auditorium of the Montreal Neurological Institute and Hospital – the venue of the foundation’s very first symposium on ALS. Organizers of this year’s event expect to greet some 150 participants who will listen to 24 experts. Among the speakers in this year’s program: Jasna Kriz of Université Laval, Pierre Drapeau of Université de Montréal, Jeffrey Rothstein of Johns Hopkins University School of Medicine, U-S and Makoto Urushitani of Kyoto University, Korea. They and others will speak on a number of topics, including the genetic causes and the mechanics of neurodegeneration, the role of inflammation and of the immune system, animal models, experimental therapies and the most recent results of clinical trials. Senior organizer Dr. Julien says there are no “star speakers” at this year’s symposium because “all of them are stars,” he says as he describes the André Delambre Symposium as “the best international meeting on ALS.” Its importance resides in the fact that speakers and participants often discuss results that have not yet been published.” Dr. Julien says such a formula, with a restricted number of speakers offering 20-minute presentations followed by informal question periods, ensures an atmosphere of true conviviality and makes the annual symposium an increasingly indispensable source of information for those on the cutting edge of ALS research.
It is of course fitting to have the last word go to the man who gave his name and his singular drive and determination to the foundation behind this annual gathering. Toward the end of his life, André Delambre offered an interviewer these words of hope: “My life’s journey will be shorter than expected…but perhaps the best is yet to come.”
The annual Montreal Walk for ALS: World-renowned researchers are lacing up
Researchers attending this year’s André Delambre Symposium on ALS will be on hand for the annual Montreal Walk for ALS, being held on Saturday, September 20, at Parc Maisonneuve. The walk will give researchers an important opportunity to offer ALS sufferers first-hand information about progress in the fight against ALS and to express their solidarity with those afflicted and their caregivers. Perhaps most importantly, it gives those with ALS and their families a chance to see that the men and women at the vanguard of the fight against this deadly disease have a face and a name and, especially, that they have hope.