Schedule of events

Here is the agenda as of October 18th. Do note that because of unexpected circumstances, some speakers / topics remain to be confirmed. We are working hard and continuing to reach out to specialists and organizations who are key to our conference objectives: “Unite, Educate and Advocate” in order to offer the strongest curriculum for our PVNH Conference in Vancouver. Be advised that some of the times may shift, as we continue for firm up teh schedule.

Day 1, October 21

  • 8:00-8:25am : Registration
  • 8:30am: Welcome remarks: Yolaine Dupont
  • 8:35am-9:00 am: Roundtable: Who we are
  • 9:00am-10am:  Causes and Consequences of Gray Matter Heterotopia (Dr. Cardoso) CONFIRMED
  • 10am- 10:30am: Social break
  • 10:30-11:30am:  TBC
  • 11:30am-12:30am: Treatment options  for heterotopias (Dr. Chang) (remote) CONFIRMED
  • 12:30pm–1:30pm: Opening Lunch
  • 1:30pm – 2:15pm: – The genetics of brains malformations  (Dr. Hehr) CONFIRMED
  • 2:15pm – 2:45pm: Ask the Experts Panel : Drs. Hehr & Cardoso
  • 2:45-3:15pm: Social break
  • 3:15pm – 4:00pm: : Ehlers-Danlos & PVNH (Dr. Vandersteen) CONFIRMED
  • 4:00pm – 5:15pm: Transitioning to Adult Neurology care (Child Neurology Foundation) (remote) CONFIRMED

Optional event: Appies and drinks at PVNH headquarters: The Regal Beagle (bus or cab to family-friendly pub)

Day 2, October 22

  •  9am – 9:45 am 47 patients with FLNA associated periventricular nodular heterotopia (Dr. Hehr) CONFIRMED
  • 9:45 am – 11:30am:  Meeting time between families and experts
  • 11:30 am – 12:30pm:  Therapeutic Recreation (Sheila Kennedy) CONFIRMED
  • 12:30pm – 1:30pm: Lunch
  • 1:30pm – 2:15pm: FLNA-affected Twin Boys / Update on Research (Dr. Robertson) (remote) CONFIRMED
  • 2:15pm – 2:35pm: Parents journey: Gemma and Tony Hart (remote)
  • 2:35pm3:00pm: Social Break
  • 3:00pm – 4pm :  Sudep / Sudep & Technology + SUDEP Aware Thunder Clap
  • 4pm – 4:45pm : Caring for the carer – TBC

Optional event: Plans to be confirmed

Day 3, October 23

  • 9am- 9:15 am:  SUDEP Aware ThunderClap
  • 9:15am – 10am:  Cannabis & Epilepsy TBC
  • 10am – 10:30 am Social Break
  • 10:30am – 11:30: How to be your child’s / your own best advocate (Chad) CONFIRMED
  • 11:30am–12:15pm  Music Therapy and Epilepsy (Gemma Isaac) CONFIRMED
  • 12:15pm – 1:15pm: Lunch
  • 1:15 pm – 2:00pm – Clinical trials / research studies: how to find them – TBC
  • 2pm – 2:45pm:  1 year post- surgery (remote presentation) CONFIRMED
  • 2:45 – 3:30 – Brain Tissue & Donation Update: NIH Neuro BioBank / Epilepsy Brain Bank Sask
  • 3:30pm – 3:45pm: Closing remarks by Yolaine Dupont