Being on the receiving end of a diagnosis of Duchenne Muscular Dystrophy is a very difficult event for parents. Marie-Catherine Du Berger, creator of La Force Foundation knows something about it. The creation of the foundation allowed her to become an “actor” instead of being a spectator of her son Anakin’s illness. Contributing to Canadian research for Duchenne muscular dystrophy has been an integral part of La Force’s mission since the very beginning. Hope lies in science and new treatments.
For their part, Jean-Philippe Morand and his wife, Mélany Ouellet, a Quebec City region family, got on their pedals to get involved and bring their contribution to the DMD community. Their son Victor was initially diagnosed with Becker’s muscular dystrophy. Subsequently, this became DMD, the most severe form of muscular dystrophy. This meant going through two traumas instead of one.
Last Fall, for the fourth consecutive year, the Morand-Ouellet clan organized the Dystrospin. This is a spinning marathon where some participants pedal for up to 10 consecutive hours. In October 2016, Dystrospin partnered with the La Force Foundation to donate more than $12,000 to two Quebec-based researchers: Dr. Jérôme Frenette (OPG) and Dr. Jacques Tremblay (CRISPR/Cas 9). Victor will also get a high-performance “Team Hoyt” wheelchair, which he’ll be able to use to take part in sports. In addition, Jean-Philippe Morand intends to participate in other sports challenges with his son, in order to raise awareness about Duchenne muscular dystrophy.
Living with Duchenne muscular dystrophy is a difficult thing. Nevertheless, this contribution to two research projects by families is proof that all difficult situations can lead to positive actions. It’s a gesture of love and courage to hand over this sum, with Victor and Anakin as their inspiration. We hope to bring hope to all families with children with DMD. There is strength in unity: together we can make a big difference.
For more information about research project :
PROJECT 1 –Osteoprotegerin (OPG)
Team Centre Hospitalier Universitaire de Québec about osteoprotegerin (OPG). (read more)
PROJECT 2 – CRISPR/Cas9 (Read more)
Team Jacques Tremblay for «Correction du gène de la dystrophie avec la technologie CRISPR/Cas9».
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