​Carion Fenn Foundation was established to Educate, Support and help find solutions for those affected Rare Diseases such as Syringomyelia (SM), Chiari Malformation (CM), EDS, Arthritis, Epilepsy, Sarcoidosis, LAM, Familial Ataxia and other Diseases or Disorders. There are over 7,000 known rare diseases or disorders and more than 50% of those affected are children. We strive to help those affected from suffering in silence without the help and support that they deserve.

Our foundation was founded by award winning inclusiveness and accessibility advocate Carion Fenn, recipient of The Ontario Volunteer Service Award, Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Ajax Civic Award & Accessibility Award, and Abilities Awards - Advocacy Award. ​We provide support through our monthly Rare Disease Support Grou Meetings in partnership with Ajax Public Library. Educate and help find support through our Rare Disease Expo Supported by Town or Ajax, Mental Health Forum in partnership with Ajax Public Library, Flag Raisings and Proclamations. ​

​Our goal is to support communities by teaming up with organizations like the Ajax Public Library as our support group meetings partner. Having our first annual Rare Disease Expo support by The Town of Ajax, having the Carion Fenn Award sponsored by Pickering Rotary Club, and having Exhibitors like Diabetes Associations,Von Canada, Lam Canada, Epilepsy Durham, Town of Ajax Diversity and Accessibiity Committee, Pickering Rotary Club, NF Ontario, Community Care Access Centres, Health First Family Chiropractic, Miranda Naturopathic Clinic, Abilities Centre. 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.​

Sponsored by:

Meet Caroline and learn about her brave story & joulrney living with Syringomyelia & other Rare Conditions. <click here> to learn more. 


Next Support Group Meeting (Reiki): April 13 6:30pm

March is Epilepsy Awareness Month & Purple Day is March 26. Follow Aydin's Purple Day & Epilepsy Journery as our Ambassador.  

March: Epilepsy

Awareness Month