Session Two of Defeat Duchenne Canadian Conference Addressing Standards of Care in Canada this Weekend

September 7th is World Duchenne Awareness Day. Over the past decades, life expectancy of individuals affected by Duchenne muscular dystrophy (DMD) has increased significantly, and adults with DMD are not an exception anymore. Adult life with DMD comes with new challenges and opportunities as well as with new medical issues. This World Duchenne Awareness Day, organizations are globally advocating to create opportunities for young adults and adults with DMD to live their lives to the fullest. Read more about today’s global event here

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.’

There’s still time to register for the  second session of the CPD-accredited Defeat Duchenne Canadian Conference, coming up this weekend!

Register for session two here

 

The objectives of this session are to:

  1. Describe the current standard of Duchenne neuromuscular management and transition from pediatric to adult care in Canada
  2. Identify and address current gaps in neuromuscular management and transition from pediatric to adult care within their clinics
  3. Describe the lived experience of neuromuscular management and transition from pediatric to adult clinical care for Duchenne patients and their families

 

The second session will take place on:

Friday, September 10 from 11 a.m. to 2 p.m. EDT: Neuromuscular Management

Moderated by: Dr. Kathryn Selby (Pediatric Neurologist) and Dr. Hanns Lochmüller (Adult Neurologist)

Agenda: 

  • DMD care considerations – Dr. Kathryn Selby (Pediatric Neurologist)
  • Newborn screening – Dr. Jim Dowling (Pediatric Neurologist)
  • Access to medications – Dr. Craig Campbell (Pediatric Neurologist)
  • Pediatric/Adult DMD clinics – Dr. Kerri Schellenberg (Adult Neurologist) and Dr. Mike Berger (Adult Physiatrist)
  • Education in DMD – Dr. Hanns Lochmüller (Adult Neurologist)
  • Steroid management – Dr. Hugh McMillan (Pediatric Neurologist)
  • Vamorolone – Dr. Eric Hoffman (Researcher, CEO of ReveraGen)
  • Exon skipping – Dr. Craig Campbell (Pediatric Neurologist)
  • How to discuss research with families – Dr. Jim Dowling
  • Importance of Nutrition – Alex Printis (Dietitian)
  • Future directions – Dr. Kathryn Selby (Pediatric Neurologist) and Dr. Hanns Lochmüller (Adult Neurologist)

Other panelists:

  • Dr. Suzanne Salsman (Adult Physiatrist)
  • Dr. Nadim Jiwa (Adult Neurologist)

Saturday, September 11 from 11 a.m. to 2 p.m. EDT: Transition from Pediatric to Adult Care

Moderated by: Dr. Laura McAdam (Pediatrician) and Dr. Colleen O’Connell (Adult Physiatrist)

Agenda:

  • Importance of transition to adult care – Dr. Colleen O’Connell (Adult Physiatrist)
  • CPS guidelines on transition of care – Dr. Laura McAdam (Pediatrician)
  • Transition to adult care services- Dr. Kathryn Selby (Pediatric Neurologist) and Dr. Hana Alazem (Pediatric/Adult Physiatrist)
  • Interactive breakout session 1: How to address current gaps in transition of services
  • Transition to adulthood – Bhavnita Mistry (Research Manager/Coordinator), Dr. Monique Taillon (Pediatric Physiatrist), Dr. Laura McAdam (Pediatrician)
  • Interactive breakout session 2: How to address current gaps in transition to adulthood.
  • Transition resources – Dr. Laura McAdam (Pediatrician)

Other panelists:

  • Dr. Sandrine Boueilh (Pediatric Physiatrist)
  • Dr. Lindsay Hubenig (Pediatric/Adult Physiatrist)
  • Debra Chiabai (Parent)
  • Nancy Klinkhamer (Parent)
  • Mike Klinkhamer (Adult with Becker muscular dystrophy)

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!

 

The conference is an Accredited Group Learning Activity as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada, and approved by The University of Ottawa’s Office of Continuing Professional Development.

DDCC 2021 - E-Blast Banner FINAL UPDATED

Read next...

AGAMREE (vamorolone) Approved treatment for DMD in Canada

A Milestone in Neuromuscular Care: AGAMREE® (vamorolone) Approved as the First Treatment for Duchenne Muscular Dystrophy in Canada

Health Canada has approved AGAMREE® (vamorolone), the first-ever treatment for Duchenne Muscular Dystrophy (DMD) in Canada. Patient Support Program opens for enrollment on October 10, 2025.

Website - SBMA published on CMAJ.png

New Best Practice Recommendations for SBMA Care in Canada

Congratulations to Dr. Kerri Schellenberg, the team of Canadian experts, NMD4C Steering Committee members and Investigators, on publishing the first Canadian SBMA care guidelines!

2025 NMD4C ANNUAL MEETING

Advancing Neuromuscular Research and Care: Highlights from the 2025 NMD4C Annual Meeting

On September 11, NMD4C hosted its 2025 Annual Meeting in Ottawa, bringing together clinicians, researchers, trainees, and partners for a full day of collaboration, strategic dialogue, and community-building.

2025 Clinical Summer School

NMD4C Hosts Inaugural Clinical Summer School to Empower Canada’s Future Neuromuscular Leaders

On September 10–11, NMD4C hosted its inaugural Clinical Summer School in Ottawa, bringing together 19 neuromuscular clinical fellows from across Canada for two days of hands-on training, mentorship, and networking. Led by national experts and co-chaired by Drs. Gordon Jewitt and Marianne Nury, the program complemented NMD4C’s accredited lecture series and fostered peer connection through dedicated community-building sessions.

2026 Neuromuscular Postdoc Research Fellowship Competition

2026 Neuromuscular Postdoctoral Research Fellowships Funding Competition is Now Open!

Apply Or Share this opportunity with the trainees in your network — Deadline: October 14, 2025. Hosted by Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC)

Clinical Fellowship Awardees

Announcing the 2026 Neuromuscular Clinical Fellowship Award Recipients

We are excited to share that the 2026 Neuromuscular Clinical Fellowship Awards have been awarded! These fellowships strengthen clinical training in neuromuscular medicine and help prepare the next generation of specialists who will advance neuromuscular care across Canada.