Benefit concert for the Fondation du CHUM
Nathalie Nahmiash, Director of Philanthropic Development at the Fondation du CHUM; Carmen Desjardins, a member of the organizing committee of the benefit concert; Danielle Lepage, patient of Dr. Brais and principal organizer of the benefit concert; Dr. Bernard Brais, a neurologist at CHUM
December 15, 2009 – Danielle Lepage, a resident of the Lanaudière region, is just over 50, but her body is as fragile as that of a 90-year-old. To spread the word about the disease she is battling, and especially to raise funds for research into this rare disease called hereditary sensory neuropathy type II, or HSN2, she decided to organize a concert featuring Michel Beauchênes and the band S.P.E.C. This event raised $6,515.
This money will support the research of CHUM neurologist Dr. Bernard Brais. Dr. Brais is a clinician and researcher. He is in charge of the neurogenetic laboratory at the CHUM research centre. His area of particular interest is diseases that are prevalent in the Quebec gene pool, and his current research involves eight diseases, including sensory neuropathy. In general, he focuses on expanding medical knowledge of the origins of the Quebec gene pool and its influence on health, with the goal of developing a better understanding of these diseases and new therapeutic approaches.
In the Lanaudière region alone, more than 20 people are affected by HSN2. Living with the disease is a heavy burden, as Ms. Lepage explains: “Because of HSN2, I’ve had to completely change the way I live. Simple things, like putting on makeup, could kill me. My bones are as fragile as fine china.”