After their twin daughters Valérie and Alexandra were diagnosed with Andermann syndrome in 1991, Louise Gagné and Alain Coudé were faced with the difficult realization that this rare neurodegenerative genetic disease had no treatment. Worse yet, research at the time had not even been able to identify the cause of this disorder, which damages peripheral nerves related to sensation.
In face of this difficult diagnosis, the family decided to create La Fondation des Jumelles Coudé in 1993. Their goal was to give hope to the increasing number of children with the disease by fundraising for research, which has since succeeded in bringing some clarity to this rare disorder.
Since its creation, the foundation has distributed over one million dollars in donations to support the research of Dr. Guy Rouleau. Prior to his appointment as Director of The Neuro in 2013, Dr. Rouleau was the Director of the CHU Ste-Justine Research Centre and the Director of the Centre of Excellence in Neuroscience at Université de Montréal. Dr. Rouleau and his team managed to locate the gene responsible for Andermann syndrome in 1996, which was identified in 2002. This breakthrough allows individuals to be tested for carrier status to control the propagation of the disease.
The foundation’s latest donation of $300,000 established Le Fonds dédié des jumelles Alexandra et Valérie Coudé at The Neuro. This endowment will support in perpetuity the work of a graduate student researching a neurodevelopmental or neurodegenerative disease that appears during infancy, in particular sensorimotor polyneuropathy with or without agenesis of the corpus callosum.
De Barros describes the impact this funding will have on her research:
This support from La Fondation des Jumelles Coudé will give me the opportunity to expand my horizons by contributing to research in Hereditary Motor and Sensory Neuropathy/Agenesis of the Corpus Callosum and Restless Leg Syndrome. My goal is to help other neuroscientists to understand this huge puzzle that is the human brain and hopefully discover new treatments to improve quality of life for patients. By awarding me this funding, I will be able not only to learn new techniques but to continue with my studies in one of the best neuroscience programs in the world. This act of generosity has inspired me to never give up on my dream of helping people.
Andermann Syndrome is named after Dr. Frederick and Dr. Eva Andermann, who first described the syndrome in 1972. Both Drs. Andermann have been Faculty members at The Neuro for over 30 years.
