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 Specialist

Catherine Taylor Webb, Idaho, USA & International – Social Media Collaborator

Sarah Ayala, Florida, USA & International – Social Media Collaborator

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

Anick Desnoyers, Québec, Canada – Strategic Advisor