NMD4C: The Neuromuscular Disease Network for Canada

Thank you to everyone able to join us for the 2021 Defeat Duchenne Conference Series addressing Duchenne Muscular Dystrophy Standards of Care in Canada. Defeat Duchenne Canada (formerly Jesse’s Journey) in partnership with NMD4C and MDC are so appreciative of all our speakers and conference chairs who dedicated their time and energy in developing the programs. We successfully generated insightful conversations and discussions on how we might address care gaps in Canada. We are now working towards publishing the proceedings from this conference series to help shape the future of care for your patients and our families living with Duchenne in Canada.

A total of 218 participants and 55 speakers attended the conference over the three sessions, and we are extremely grateful for all of the questions, insights and discussions we received from our audience during the conference. All of the sessions were recorded exclusively for educational purposes, and are available on request. Please contact for more information.

On behalf of the NMD4C, Defeat Duchenne Canada and MDC, we would like to thank our conference committee, chairs, speakers and panelists who have joined us over the inaugural Defeat Duchenne Canadian Conference:

Our Conference Committee and Chairs:

Dr. Kathryn Selby, Dr. Hanns Lochmüller, Dr. Craig Campbell, Dr. Nicholas Chrestian, Dr. Homira Osman, Dr. Erin Beattie, Nicola Worsfold, Rochelle ten Haaf, James Davis, and Kate Miller

Session 1 Speakers and Panelists: Endocrinology, Cardiology and Respirology Management

Drs. Reshma Amin, Jeremy Road, David Zielinski, and Marta Kaminska (Respirology)

Drs. Derek Human, Mariana Lamacie, Emilie Jean-St-Michel, Michael Khoury, and Andres Klein (Cardiology)

Drs. Leanne Ward, Sabrina Gill, Stasia Hadjiyannakis, and Annie Sbrocchi (Endocrinology)

Session 2 Speakers and Panelist: Neuromuscular Management and Transition from Pediatrics to Adult care

Drs. Kathy Selby, Hanns Lochmüller, Craig Campbell, James Dowling, Hugh McMillan, Eric Hoffman, Suzanne Salsman, Mike Berger, Kerri Schellenberg, and Nadim Jiwa. Dr. Homira Osman (MDC), Alex Printis (dietitian) and Nicola Worsfold (Jesse’s Journey) (Neuromuscular)

Drs. Laura McAdam, Colleen O'Connell, Monique Taillon, Sandrine Boueilh, Hana Alazem, and Lindsay Hubenig. Bhavnita Mistry (research manager/coordinator), Debra Chiabai and Nancy Klinkhamer (DMD parents), and Mike Klinkhamer (adult with DMD) (Transition care)

Session 3 Speakers and Panelist: Orthopedic, Rehabilitation, Psychosocial Management and Duchenne and the Brain

Drs. Chris Reilly, Patricia Larouche, and Hernan Gonorazky and Fatima Vido-Vicchio (physiotherapist) (Orthopedics)

Drs. Sue Dojeiji, Jordan Sheriko, Anna McCormick, and Michael Berger. Charise MacDonald (occupational therapist), Sarah Moore (therapeutic recreation specialist), Khalid Mahdi (adult with DMD), and Nicola Worsfold (Jesse’s Journey) (Rehabilitation)

Professor Francesco Muntoni, Dr. Veronica Hinton, Dr. Hugh McMillan, and Debra Chiabai (DMD parent) (Duchenne and the Brain)

Drs. Jean Mah, Stephanie Plamondon, Natalie Truba, and Amy McPherson. Camara van Breemen (nurse practitioner), Zoe Scwartz (pediatric social worker), and Debra Chiabai (DMD parent) (Psychosocial)