After their twin daughters Val茅rie and Alexandra were diagnosed with Andermann syndrome in 1991, Louise Gagn茅 and Alain Coud茅 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 Coud茅 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 Universit茅 de Montr茅al. 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鈥檚 latest donation of $300,000 established Le Fonds d茅di茅 des jumelles Alexandra et Val茅rie Coud茅 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 Coud茅 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.
