$1M Donation Creates Quebec’s First ALS Research Chair

A $1 million gift from the Manouk Djoukhadjian Family Foundation II will create Quebec’s first philanthropic research chair on amyotrophic lateral sclerosis (ALS).

The donation to the Armand-Frappier Foundation will establish the Anna Sforza Djoukhadjian Philanthropic Research Chair to advance ALS research at the Institut national de la recherche scientifique (INRS).

Through an endowment fund, the research chair will be led by Kessen Patten, a researcher in genetics and neurodegenerative diseases at the INRS Armand-Frappier Sante Biotechnologie Research Centre.

For the last five years, Patten has led a research program that aims to develop treatments for the disease, which affects more than 200,000 individuals globally, including 3,000 in Canada. Each year, 1,000 Canadians are diagnosed with the progressive neurological disease for which there are no approved therapies that reverse disease damage. More Canada residents die annually from ALS than from muscular dystrophy, multiple sclerosis and cystic fibrosis combined.

“The drugs currently approved to slow the progression of ALS only have modest beneficial effects,” Patten said in a press release. “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.”

A global effort is underway to try to find therapies that will make ALS a treatable disease, he added.

Patten and his team will work on the development and use of the zebrafish model as well as patient-derived motor neuron cell cultures to better understand how to control the condition.

Zebrafish have been shown to be useful preclinical models of ALS linked to angiogenin mutations. Angiogenin is a stress-activated protein involved in the development and protection of the central nervous system.

The researchers will test multiple therapeutic compounds in their ALS preclinical models, and look for those that improve disease symptoms more significantly. Candidates with the most promise in these models with then undergo additional testing, and if proven safe, move into clinical trials.

“Our aim is to identify potential therapeutic compounds through a method known as phenotypic drug screening, and to translate these discoveries rapidly into human clinical trials,” Patten said.

Less than a year after his wife’s 2018 death from ALS, Manouk Djoukhadjian created the foundation for the establishment of an ALS research chair to hopefully defeat the disease.

“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,” said Djoukhadjian, whose wife was diagnosed in 2013.

“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.”

Luc Reny, president of the Armand-Frappier Foundation, said creation of the research chair will bring great hope to everyone affected by ALS. The nonprofit foundation was established to support the INRS research center.

Born in Syria and of Armenian descent, Djoukhadjian completed his engineering studies in Germany before moving to Quebec, where he made his mark as an entrepreneur and philanthropist. He established his family’s first foundation in 2010 to support students needing financial help for their education.