2016 PVNH Conference Agenda

Do note that because of unexpected circumstances, some speakers / topics remain to be confirmed. We are working hard and continuing to reach out to PVNH 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, BC, Canada.

We plan to have the conference agenda be from 9-am-5pm on Friday, October 21st and Saturday, October 22nd,  and up to 3pm on Sunday, October 23rd. However, this may be subject to change as we finalize the schedule.

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Here are the topics on the agenda as of September  11th.

  • Study of 47 patients with FLNA associated periventricular nodular heterotopia (Dr. Hehr)
  • Causes and Consequences of Gray Matter Heterotopia  (Dr. Cardoso)
  • Treatment options  for heterotopias (Dr. Chang) (remote presentation)
  • The genetics of brain malformations – TBC
  • Ehlers-Danlos & PVNH (Dr. Vandersteen)
  • How to be your child’s / your own best advocate (Chad Farquharson)
  • Therapeutic Recreation  (Sheila Kennedy)
  • Music Therapy and Epilepsy
  • FLNA-negative affected individuals – TBC
  • FLNA mutation in twin boys / update on research (Dr. Robertson) (remote presentation)
  • Brain Bank & Tissue Donation Update
  • Stereotactic Surgery  - TBC
  • ARFGEF2 gene mutation – TBC
  • 1 year post-surgery  (remote presentation)
  • A mother’s perspective: Road to diagnosis (remote presentation)
  • Rare Epilepsy Network Study (remote presentation) TBC
  • Ask the Experts Panel
  •  One on one meeting time between families and specialist