Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Defeat Duchenne Canadian Conference

With 218 attendees, 55 speakers, and seven sponsors, the inaugural CPD-accredited Defeat Duchenne Canadian Conference was a huge success!

Hosted by Jesse’s Journey in partnership with Muscular Dystrophy Canada and the Neuromuscular Disease Network for Canada (NMD4C), this was the first national summit solely focused on Duchenne muscular dystrophy (DMD) for health care providers across Canada.

The theme for this year’s event was ‘Addressing DMD Standards of Care (SoC) in Canada’, the conference included:

  • Two survey’s capturing the Canadian standard of care landscape:
    • #1: Focused on multi-disciplinary care teams with 163 respondents
    • #2: Focussed on individuals affected by Duchenne with 94 respondents
  • Three educational sessions across six days covering nine topics:
    • Session 1: Endocrinology, Osteoporosis, Cardiac, and Pulmonary Management in Duchenne (June 2021)
    • Session 2: Neuromuscular Management and Transition from Pediatric to Adult Care in Duchenne (September 2021)
    • Session 3: Orthopedic, Rehabilitation, and Psychosocial Management in Duchenne, plus Duchenne and the Brain (December 2021) 

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 to help shape the future of care for patients and families living with Duchenne in Canada. 

Finally, we want to say a special thank you to our conference committee, chairs, speakers and panellists:

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 Panellists:

  • Respirology Management: Drs. Reshma Amin, Jeremy Road, David Zielinski, and Marta Kaminska
  • Cardiology Management: Drs. Derek Human, Mariana Lamacie, Emilie Jean-St-Michel, Michael Khoury, and Andres Klein
  • Endocrinology Management: Drs. Leanne Ward, Sabrina Gill, Stasia Hadjiyannakis, and Annie Sbrocchi

 Session 2 – Speakers and Panellists: 

  • Neuromuscular Management: 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)
  • The Transition from Pediatric to Adult Care: 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)

 Session 3 – Speakers and Panellists: 

  • Orthopedic Management: Drs. Chris Reilly, Patricia Larouche, and Hernan Gonorazky and Fatima Vido-Vicchio (physiotherapist)
  • Rehabilitation Management: 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)
  • Duchenne & the Brain: Professor Francesco Muntoni, Dr. Veronica Hinton, Dr. Hugh McMillan, and Debra Chiabai (DMD parent)
  • Psychosocial Management: Drs. Jean Mah, Stephanie Plamondon, Natalie Truba, and Amy McPherson. Camara van Breemen (nurse practitioner), Zoe Schwartz (pediatric social worker), and Debra Chiabai (DMD parent) 

All of the sessions were recorded exclusively for educational purposes and are available on request. Please contact [email protected] for more information.