ALS: Quebec’s first philanthropic research chair – $1 million to advance research in Amyotrophic Lateral Sclerosis at the INRS

LAVAL, QC, Jan. 27, 2020 /CNW Telbec/ – A one million-dollar ($1M) donation from the Manouk Djoukhadjian Family Foundation II to the Armand-Frappier Foundation has allowed the creation of the Anna Sforza Djoukhadjian Philanthropic Research Chair on amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig‘s or Charcot’s disease. Over 200,000 people in the world live with ALS, amongst which 3,000 are in Canada. Every year, 1,000 Canadians will be diagnosed with ALS. Because there is, to this day, no known treatment or cure, 80 percent of those living with the disease will succumb to it within the two to five years following their diagnostic.¹ In Canada, ALS is the neurological disease which causes the most deaths. Every year, more Canadians die from ALS than muscular dystrophy, multiple sclerosis and cystic fibrosis put together.²

This new philanthropic research chair on ALS, the first ever in Quebec, will be financed by an endowment fund, and led by Professor Kessen Patten, a researcher in genetics and neurodegenerative diseases at the Armand-Frappier Santé Biotechnologie Research Centre of the Institut national de la recherche scientifique (INRS). Professor Patten has been leading a recognized research program which aims at developing therapeutics for ALS, since 2015.

“The drugs currently approved to slow the progression of ALS only have modest beneficial effects. But thanks to this major donation, we will be able to pursue our research in order to discover effective drugs that can be used by ALS patients to preserve or rescue their neurons and muscle movement,” states Professor Patten.  ALS causes the gradual death of motoneurons, which leads to the loss of muscle usage, progressive paralysis and eventually death. “Such funding will allow us to play an active role in the global effort towards making ALS a treatable disease,” he adds.

Professor Patten’s team at the INRS will conduct research on the development and use of the zebrafish model as well as motoneuron cell culture from diagnosed patients in order to better control the disease. “Our aim is to identify potential therapeutic compounds through a method knows as phenotypic drug screening, and to translate these discoveries rapidly into human clinical trials,” explains Professor Patten.

“For four and a half years, I personally experienced the devastating ravages caused by this disease… feeling powerless and helpless, as many of us do, to help the person we love,” explains Mr. Manouk Djoukhadjian, whose wife died of the disease in 2018.

“I didn’t want this to happen to other families. This is why I decided to undertake a concrete project with the aim to slow down, stop and eventually eliminate this ruthless disease. The only way to achieve this goal is to support the research lead by devoted researchers who share our determination to tackle the beast. The creation of the Anna Sforza Djoukhadjian Philanthropic Chair, the first-ever Quebec philanthropic research chair devoted to this disease, will allow the formulation of new studies devoted entirely to ALS, as well as the development of pharmaceuticals and treatments. With the collaboration of the Fondation Armand-Frappier and under the leadership of Professor Kessen Patten, we are confident that we will make great progress in our cause, in order to offer a better life to countless affected individuals. I also hope to have given some joy and comfort to my wife and that this will contribute to reduce the pain of the unfortunate who are affected like she was,” adds Mr. Djoukhadjian, who held a family foundation involved in financial help for education. This is how, less than a year after his wife’s passing, he decided to create a new foundation, the Manouk Djoukhadjian Family Foundation II, which would be dedicated to the creation of a research chair to defeat ALS.

For his part, Mr. Luc Reny, president of the Armand-Frappier Foundation and vice-president of Power Corporation of Canada, added that “the creation of a research chair on ALS is a great step for the research done at the Armand-Frappier Santé Biotechnologie Research Centre. We are very grateful to the Manouk Djoukhadjian Family Foundation II for this important donation which allows the creation of the philanthropic research Chair, and the provision of the resources necessary to the attainment of conclusive results. The creation of this Chair brings much hope to all persons affected by ALS.”

About the Armand-Frappier Foundation

The Armand-Frappier Foundation is a non-profit organization whose mission is to support the researchers and students of the Armand-Frappier Santé Biotechnologie Research Centre of the INRS. The Foundation is committed to promoting access to graduate and post-graduate education for motivated scientists who dedicate themselves to research in public health; supports the development and advancement of innovative and priority research projects in the areas of human and public health; promotes the findings of its scientists and the work of the next generation of researchers.

About the INRS

The Institut national de la recherche scientifique (INRS) is the only Quebec establishment dedicated exclusively to research and training in higher education. The work of its professors and students is recognized across the world. The INRS works in partnership with its community, as well as the industry, and is proud to contribute to our society’s development by its discoveries, and by the training of a qualified new generation of researchers who innovate in the scientific, social and technological fields.

ALS in a few words

Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig‘s or Charcot’s disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

This non-contagious disease is incurable. Few treatment options exist for the majority of people living with ALS. Approximately 80 % of people with ALS die within two to five years of being diagnosed.

How ALS works in the body

The brain is connected to the muscles through millions of specialized nerve cells, called motor neurons, which serve as our bodies’ internal wiring and enable us to move our bodies as we choose. Motor neurons work in pairs: an upper motor neuron in the brain extends to the brainstem at the back of the neck or the spinal cord, and a lower motor neuron extends from the brainstem or spinal cord to the muscle. The brain sends a signal along these motor neurons telling a muscle to contract.  This signal is an electrical impulse created by chemicals in our neurons.

In ALS, motor neurons gradually break down and die. This means that the brain can no longer communicate with the muscles of the body. As a result, these become weak and, eventually, someone living with ALS will be unable to move them.

What Causes ALS?

ALS is caused by multiple interdependent factors that are based on changes in people’s genes, and possibly by a contribution of environmental factors. A number of genes have been identified as playing a role in the development of ALS. Through research, we are learning more about ALS and the multiple factors that may trigger its development.

ALS Figures

• More than 200,000 people around the world are living with ALS.
• An estimated 3,000 Canadians are currently living with ALS.
• Each year approximately 1,000 Canadians die from ALS. A similar number of Canadians are diagnosed with ALS each year.
• 80% of people living with ALS die within two to five years following their diagnosis.
• ALS is the most common cause of neurological death in Canada.
• More people die every year of ALS than of muscular dystrophy, multiple sclerosis and cystic fibrosis combined.

THE FOUNDATIONS
Famille Manouk Djoukhadjian

Born in Aleppo, Syria, and of Armenian descent, Mr. Manouk Djoukhadjian arrived in Canada, after having completed his engineering studies in Germany, with the energy and will to build a better world for his family and himself, but also for the Quebecer society into which he soon made his mark as an entrepreneur and philanthropist.

Eager to give back to his adoptive country and community, Mr. Djoukhadjian decided to create in 2010 a foundation in his name, the Fondation Famille Manouk Djoukhadjian. The main goal of this endeavour was to offer financial aid to deserving young students who wished to pursue higher education but who didn’t have the means of doing so. Numerous young students have thus benefitted, and continue to benefit, from his generosity.

However, a terrible tragedy befell him and his family in 2013, when his wife was diagnosed with ALS. “Her premature passing in 2018 meant losing a wife and a devoted mother who was the heart of our family. For four and a half years, she braved this cruel disease while it was holding her body hostage. We will never forget the hardships she met and traversed, and will always remember her resilience. The hopelessness and injustice that inhabit us, in knowing that in 2020, there is still no cure or treatment which would give an inch of hope in the face of this disease which touches thousands every year, pushed my father and I to create a positive, sustainable and concrete initiative which will give cause for hope.”, explains his daughter Audrey.

It is actually with her that, a few months after his wife’s passing, Mr. Djoukhadjian discovered the promising work done by the Armand-Frappier Santé Biotechnologie Research Centre under the leadership of Professor Kessen Patten. He decided to create a new foundation, the Fondation Famille Manouk Djoukhadjian II, and to make a donation to the Centre in order to establish the Chaire Philantropique Anna Sforza Djoukhadjian on amyotrophic lateral sclerosis (ALS).

“Our donation comes from our family’s desire to lighten the suffering of persons and families affected by ALS. By creating the first philanthropic chair in the country dedicated entirely to ALS research and, more particularly, to the discovery of pharmaceuticals and the development of treatments, we wish to bring hope to those who are affected – because they will be confident that the scientific community is sensitized to their cause and hard at work to try and better understand this disease and discover treatment to halt the ravages caused by ALS. More than anything, by creating this research chair which is solely dedicated to ALS, we wish to bear witness to the important of pursuing research on this devastating disease, which has, for too long, been left to its own devices,” stated Audrey as she addressed the attendees of the Fête Champêtre, the Fondation Armand-Frappier’s flagship event, on November 21^st 2019, at Marché Bonsecours.

SOURCE Institut National de la recherche scientifique (INRS)

For further information: SOURCE: Armand-Frappier Foundation; INFORMATION: Ms. Maral Tersakian, Executive Director, Armand-Frappier Foundation, Office (450) 686-5360, ext. 1, Cellular (514) 606-3564