Founder, Executive Director, Board President, Patient Navigator & Advocate
Yolaine Dupont, British Columbia, Canada & International –
FLNA gene, FLNA lung deficiency and all other forms of neuronal heterotopia; Research; Patient navigation, Advocacy & Awareness; Epilepsy, Ehlers-Danlos Syndromes, Grief, Patient support, Illuminations, Proclamations & more / Children & Adults.
Board Member & Treasurer:
Carole Harrison
Subcortical Band Heterotopia, Advocacy, Epilepsy, Brain Surgery, VNS, Special needs education / Children
Board Member & Secretary:
Heather Kainz
PVNH, ReNU Syndrome (RNU4-2 gene), Advocacy, Epilepsy, Special needs education / Children & Adults
Group Moderators, Patient Support Volunteers and Social Media Collaborators and Ambassadors:
Christina Frazier, Colorado, USA & International – Marfan/ EDS-like / Unknown cause & more / Adults.
Jane Hartley Jacques, Lancashire, United Kingdom & International – FLNA gene, Ehlers-Danlos Syndromes, Epilepsy / Children & Adults.
Jennifer Sheffield-Herrington, Texas, USA & International – FLNA gene / FLNA Deficiency lung disease, Lung transplant, Ascending aortic aneurysm / Children.
Natasha Brown, Greater London, United Kingdom & International – Unknown cause, Special needs advocacy / Children & Adults.
Andrew Bannister, Perth, WA, Australia & International – Awareness Ambassador & Illuminations & Rare Disease Ambassador.
Sarah Ayala, Florida, USA & International –
Awareness Ambassador & Social Media Collaborator / Special needs / Children.
Catherine Taylor Webb, Idaho, USA & International – Social Media Collaborator / Special needs / Children.
Medical Advisors & Collaborators:
Dr. Dawn Gano – Investigator and Pediatric Neurologist, BC Children’s Hospital
Head, Division of Neurology, Department of Pediatrics, University of British Columbia
Teams Cardoso-Represa-Manent, INMED / INSERM, Marseille, France / Neuro-MIG: Carlos Cardoso – Research Director; Alfonso Represa, Research Emeritus; Jean-Bernard Manent, Research Director.
Dr. Ken Myers – Pediatric Neurologist / Epileptologist, Montreal Children’s Hospital/McGill University, Montreal, Quebec, Canada
Dr. Shaine Morris – Medical Director, Cardiovascular Genetics, Texas Children’s Hospital, Houston, TX, USA
Dr. Renske Oegema – Clinical Geneticist, University Medical Center,Utrecht, Netherlands / Neuro-MIG
Dr. Tina Melicoff – Medical Director, Lung Transplant Program, Texas Children Hospital, TX, USA
