Lori Hart

Carion Fenn

Kianna H


Meet Our Team:

​​Carion Fenn Foundation Educate, Support and help find solutions for those affected by Rare Diseases like Syringomyelia (SM), Chiari Malformation (CM), EDS, Arthritis, Sarcoidosis, LAM, Familial Ataxia and other Disorders. There are over 7,000 known rare diseases and more than 50% of those affected are children. 

Our foundation was founded by award winning inclusiveness and accessibility advocate Carion Fenn, winner of The Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Ajax Civic Award & Accessibility Award, and Abilities Awards - Advocacy Award. Our goal is to support communities by teaming up with organizations like the Ajax Public Library and having our Rare Disease Expo support by The Town of Ajax!

Some Rare Diseases or Disorders you may not think are Rare: Alzheimer, Arthritis, Autism, Cancer, Cerebral palsy, Cervical Dystonia, Dementia, Diabetes, and more. See our Rare Disease page for more details.

Robin Sawh