Open Letter to Minister: Reduce the Timing Between Doses for Patients with Neuromuscular Diseases

While we look ahead with hope, possibility, and vision, we take time to reflect on a year like no other.

We started January 2020 with fresh excitement to celebrate our 25th anniversary and share a new three-year strategic plan focussed on engaging Duchenne families across Canada like never before.

We are proud of what we accomplished through unprecedented challenges, made possible by YOU – our donors, volunteers, and supporters.

Join us in reflecting on our achievements and inspiring hope for the year to come by reading Defeat Duchenne Canada 2020 Year in Review below.

Through your support, we have seen significant advancements in the quality and longevity of life for boys and young men with Duchenne. Yet while we celebrate the progress made, we recognize that we are still in a race against time to find a cure and a fight to ensure Canadians have equal access to treatments once they are discovered.

From everyone at Defeat Duchenne Canada, thank you for your continuous support in the mission to defeat Duchenne.

Help inspire others and raise awareness of Duchenne by sharing this link through email and social media: https://bit.ly/38ro9dd

The 2020 Year in Review can also be found on all of our social media channels – click the buttons below to share, like, and comment and help spread the message far and wide.

We’re starting 2021 filled with gratitude. Throughout November and December, you picked up the pieces to the complex puzzle of Duchenne muscular dystrophy and helped create the beautiful mosaic of HOPE.

With your generosity, we surpassed our goal of $100,000 to invest in research that will allow boys and young men around the world to live longer, healthier lives.

This would not be possible without the vision of seven families who cumulatively donated $50,000 to match each gift.

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Thank you for helping put a stop to this life-limiting disease.

P.S. Click the button below to learn more about the campaign and the Prendergast family.

As Defeat Duchenne Canada moves forward with future marketing and communication initiatives, we want to know:

What does the Defeat Duchenne Canada “brand” mean to you?

We ask that you share your thoughts by completing a short survey – only about 10 minutes – which will help provide us with insights and direction that will enhance our marketing and communication effectiveness.

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If the button does not work, try clicking the link here: https://bit.ly/3aCRgtA.

Please Note:

• If there are others in your household connected to Defeat Duchenne Canada or Duchenne muscular dystrophy, we encourage them to complete the survey from their perspective as well. If they are using the same computer, please ensure each individual starts and submits the survey before the next person begins.
• It’s best completed on a desktop computer or tablet because of their larger screen sizes.
• The survey is entirely anonymous.

Please complete the survey in one sitting by the end of the day, Wednesday, September 2, 2020 (the survey may time out if you leave and come back later).

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A generous donor will contribute $1 for each individual who completes the survey to a maximum of $1,000.

“We are proud to donate up to $1,000 for this survey participation.”

“Our family is delighted to sponsor this research study, and we would like to thank you for taking the time to fill out your response. We know that this investment into Defeat Duchenne Canada is going to pay huge long-term dividends to the organization, and most importantly, to the families the organization supports.

Often people like to donate to research or other more common areas, but in our experience, it is operational items like this survey that give the best return on our investment for our donation. We are grateful to the organization to let us anonymously support this opportunity.”

– R & B

Only one submission per person will be counted.

If the button does not work, try clicking the link here: https://bit.ly/3aCRgtA.

If you have any questions at all, please contact Manager of Marketing and Stakeholder Engagement, Rochelle ten Haaf, at [email protected].

We appreciate your candid comments and responses. They will be very important as we chart our future and effectiveness as an organization to defeat Duchenne.

On behalf of the Duchenne community, we thank you.

Defeat Duchenne Canada and Muscular Dystrophy Canada (MDC) were very pleased to join forces to share information on returning to school for children with neuromuscular disorders.

Many parents, caregivers, and guardians face new and difficult choices about how their child will return to school in the fall, such as deciding between in-person, virtual learning and home school. This webinar is designed to help parents, caregivers, and guardians of children with neuromuscular disorders weigh the risks and benefits of available educational options to help them make decisions about sending their child back to school.

Return to School: Considerations for Children with Neuromuscular Disorders

Friday, August 21, 2020, | 12:00 PM EST

Panellists:

• Dr. Ronald Cohn, President and CEO at the Hospital for Sick Children
• Dr. Laura McAdam, Clinician Investigator, Pediatrician at Holland Bloorview Kids Rehabilitation Hospital
• Angela Nardi-Addesa, System Superintendent – Leadership, Learning and School Improvement, Special Education and Inclusion at the Toronto District School Board
• Janine Small, Centrally Assigned Principal at the Toronto District School Board
• Nicola Worsfold, Director of Research and Advocacy at Defeat Duchenne Canada, Parent