Today is Rare Disease Day. Please take a moment of your time and read this personal message from Nicola Worsfold, founder and president of Stand for Duchenne Canada.
“Today marks an important day for our family as well as all those affected by a rare disease. Did you know that rare diseases affect one in twelve Canadians, two thirds of them children? If you don’t already know someone with a rare disease, chances are you do and may not be aware.
Our son Owen was diagnosed with Duchenne Muscular Dystrophy (DMD) 6 years ago. His rare disease is a progressive, muscle wasting, genetic disorder. Symptoms of Duchenne usually appear in early childhood, as the muscles begin to weaken. Most boys will show signs between the ages of one and three and will need to use a wheelchair by age 12. Ultimately, boys living with DMD are unable to look after themselves, requiring immense financial, emotional and physical support from families and caregivers.
While there is currently no cure for DMD, researchers are making great advances in slowing the progression of the disease. However, much work still needs to be done in Canada to ensure those affected have timely access to therapies and treatment. We are working hard to ensure this happens as time is not on our side. Help us spread the word and share your story https://duchennecanada.org/share-your-story/.”