Founder, CEO, 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 Members, Group Moderators, Patient Support Advisors and Social Media Collaborators:
Christina Frazier, Colorado, USA & International – Marfan/ EDS-like / Unknown cause & more / Adults.
Heather Kainz, Minnesota, USA & International – Special needs advocacy/ Children & 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.
Carole Harrison, Ontario, Canada & International – Subcortical Band Heterotopia, Epilepsy, Brain Surgery, VNS, Special needs education / Children
Andrew Bannister, Perth, WA, Australia & International – Awareness Ambassador & Illuminations & Rare Disease Ambassador.
Catherine Taylor Webb, Idaho, USA & International – Social Media Collaborator / Special needs / Children.
Sarah Ayala, Florida, USA & International – Social Media Collaborator / Special needs / Children.
Medical Advisors & Collaborators:
Dr. Bernard Chang – Neurologist / Epileptologist, Israel Deaconess Medical Center, Boston, MA, USA
Dr. Grazia Mancini – Clinical Geneticist, Sophia Hospital, Rotterdam, Netherlands / Neuro-MIG
Dr. Shaine Morris – Medical Director, Cardiovascular Genetics, Texas Children’s Hospital, Houston, TX, USA
Dr. Ken Myers – Pediatric Neurologist / Epileptologist, Montreal Children’s Hospital/McGill University, Montreal, Quebec, Canada
Dr. Renske Oegema – Clinical Geneticist, University Medical Center,Utrecht, Netherlands / Neuro-MIG
Team Cardoso-Represa, INMED / INSERM, Marseille, France / Neuro-MIG Carlos Cardoso – Research Director; Alfonso Represa, Research Director; Jean-Bernard Manent, Research Scientist, and many more.
Dr. Robert Guillerman – Radiologist, Texas Children’s Hospital, Houston, TX, USA
Dr. Tina Melicoff – Medical Director, Lung Transplant Program, Texas Children Hospital, TX, USA
Dr. Dawn Gano – Pediatric Neurologist at the Neuro-Intensive Care Nursery and Neonatal Neurology Follow-Up Program at UCSF Benioff Children’s Hospital San Francisco / Clinical Director of the Fetal Neurology Center of Excellence at UCSF.
Anick Desnoyers, Québec, Canada – Strategic Advisor
