NMD4C: The Neuromuscular Disease Network for Canada

The NMD4C is proud to partner with Jesse’s Journey and Muscular Dystrophy Canada (MDC) in hosting the first national summit solely focused on DMD for health care providers across Canada, with the theme for this year’s event being ‘Addressing DMD Standards of Care in Canada’. We have brought together subject matter experts from pediatric and adult care for a comprehensive overview of the Canadian adaptation to the international DMD care considerations published in 2018.

Don’t forget to register for the third and final session of the CPD-accredited Defeat Duchenne Canadian Conference, which will take place on the 3rd and 4th of December, 2021 with sessions on Orthopedic Management and Rehabilitation Management in Duchenne on December 3rd, and Psychosocial Management and Duchenne and the Brain on December 4th.

Thank you to everyone from our community who completed the pre-event Canadian Duchenne standards of care survey. The results from the survey will be used as a springboard for discussion during the event and prepared for publication thereafter. We hope to see you at the conference!

Register for session three here!

Day 1: Friday, December 3, 2021

11 a.m. – 12:30 p.m. ET: Orthopedic Management in Duchenne

Moderator:

• Dr. Kathryn Selby (Pediatric Neurologist)

Co-Leads/Speakers:

• Dr. Chris Reilly (Pediatric Orthopedic Surgeon)
• Dr. Patricia Larouche (Pediatric Orthopedic Surgeon)

Learning Objectives:

• Learn about the current landscape of Duchenne standards of care in orthopedic management across Canada.
• Understand lived experience of orthopedic care from people with Duchenne and their families.
• Participate in insightful discussion to identify and provide recommendations on how to address current gaps in Duchenne standards of care for orthopedic care.

12:30 – 2 p.m. ET: Rehabilitation Management in Duchenne

Moderator:

• Dr. Hanns Lochmüller (Neurologist)

Co-Leads/Speakers:

• Dr. Sue Dojeiji (Adult Physiatrist)
• Dr. Jordan Sheriko (Medical Director of Pediatric Rehabilitation)

Speakers:

• Dr. Anna McCormick (Pediatrician & Pediatric Physiatrist)
• Charise MacDonald (Occupational Therapist)
• Dr. Michael Berger (Adult Physiatrist)

Panelists:

• Sarah Moore (Recreational Therapist)
• Khalid Mahdi (DMD Adult)

Learning Objectives:

• Learn about the current landscape of Duchenne standards of care in rehabilitation management.
• Understand lived experience of rehabilitation services from people with Duchenne and their families.
• Participate in insightful discussions to identify and provide recommendations on how to address current gaps in Duchenne standards of care in rehabilitation management.

Day 2: Saturday, December 4, 2021

11 a.m. – 12:30 p.m. ET: Duchenne and the Brain

Moderator/Lead:

• Dr. Kathryn Selby (Pediatric Neurologist)

Speakers:

• Dr. Francesco Muntoni (Professor Pediatric Neurology) – Keynote Speaker
• Dr. Veronica Hinton (Professor of Psychology)

Panelists:

• Debra Chiabai (DMD Parent)

Learning Objectives:

• Learn about the current landscape of Duchenne standards of care involving the brain across Canada.
• Understand lived experience involving the brain from people with Duchenne and their families.
• Participate in insightful discussion to identify and provide recommendations on how to address current gaps in Duchenne standards of care involving the brain.

12:30 – 2 p.m. ET: Psychosocial Management

Moderator:

• Dr. Hanns Lochmüller (Neurologist)

Co-Leads/Speakers:

• Dr. Jean Mah (Pediatric Neurologist)
• Dr. Stephanie Plamondon (Adult Physiatrist)

Panelist:

• Debra Chiabai (DMD Parent)
• Zoe Schwartz (Pediatric Social Worker)

Learning Objectives:

• Learn about the current landscape of Duchenne standards of care in psychosocial management across Canada.
• Understand lived experience of psychosocial management from people with Duchenne and their families.
• Participate in insightful discussion to identify and provide recommendations on how to address current gaps in Duchenne standards of care for psychosocial management.