Hosted by Jesse’s Journey, in partnership with the Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC), this three-part conference brings together subject matter experts from pediatric and adult care to discuss the standards of care in Canada for Duchenne muscular dystrophy (DMD).

Learning Objectives:

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

Who should attend: 

All multidisciplinary health care professionals involved in the care of DMD patients.

Agenda:

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

Moderated by: Dr. Kathy 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 Lochmuller (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 Lochmuller (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)

When:

September 10, 2021, from 11 am – 2 pm EDT, will focus on: neuromuscular management.

September 11, 2021, from 11 am – 2 pm EDT, will focus on: transition from pediatric to adult care.

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.