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.
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