New organization seeks to unite families and improve the lives of Canadian’s living with Duchenne  muscular dystrophy

New organization seeks to unite families and improve the lives of Canadian’s living with Duchenne muscular dystrophy

September 7, 2016 (Toronto, ON) — A new organization has emerged in support of Canadian children with Duchenne muscular dystrophy and their families.

Stand for Duchenne Canada is a not-for-profit, non-charitable organization founded by a small group of passionate individuals whose lives have been personally touched by Duchenne. As a national, voluntary organization, their mission is to unite families living with Duchenne to strengthen their lives though advocacy and support.

“As a mother of a son with Duchenne, I know first-hand just how devastating and overwhelming a diagnosis can be,” says Nicola Worsfold, executive director of Stand for Duchenne. “We’re working to ensure that families have a community to turn to and that those living with Duchenne, including my son Owen, have access to the resources they need and the best care possible.”

Duchenne is a devastating muscle disease that gradually weakens the body’s muscles. Of the many types of muscular dystrophy, it is the most common and severe. Boys with Duchenne do not produce enough dystrophin, an important compound needed for muscle growth. Without it, their muscles are easily damaged and begin to breakdown. Most boys will be wheelchair bound by age 12 and experience lung and heart failure in the later stages.

Over the next few years, Stand for Duchenne aims to connect those affected by Duchenne to establish a united community across Canada, build understanding and awareness about Duchenne muscular dystrophy and advocate for access to the best available care and treatment for those living with Duchenne.

“Powered by the passion of giving my son a bright and fulfilling future, we’re going to do everything possible to ensure that boys with Duchenne aren’t forgotten,” says Nicola.

To join a community of families working to support each other and help increase awareness of this disease and the issues facing boys with Duchenne and their families, email info@duchennecanada.org or visit www.duchennecanada.org.

For more information, contact: Alyssa Acorn Cohn & Wolfe 647-259-3304 | Alyssa.Acorn@cohnwolfe.ca