NMD4C: The Neuromuscular Disease Network for Canada

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.