About Carion Fenn Foundation
The Carion Fenn Foundation is a Registered Charity established to promote health by advocating, supporting, and providing resources for chronic disease management. There are over 7,000 known rare diseases or disorders. More than 50% of those affected are children. We strive to help those who are affected, from suffering in silence, while educating the public and individuals suffering with Syringomyelia, Chiari Malformation, about rare diseases including EDS, Arthritis, Epilepsy, Cancer, Lam, Autism, NF and more.
Our foundation was founded by award winning inclusiveness and accessibility patient advocate Carion Fenn. Carion is a member of Lakeridge Health Board of Trustees, Town of Ajax Accessibility Advisory Committee, Rotary Club of Ajax and The Ajax Legion. She is also the recipient of the Ontario Volunteer Service (10yrs), Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax - Ajax Civic Award & Accessibility Award, and Abilities Awards – Advocacy Award.
Our focus is to address the needs of individuals; providing them with support services such as peer support groups, counselling, educational workshops, seminars and other resources. Our vision is to reach a point where no sufferer has to go through their illness alone; without needed support systems and resources. We envision a world where patients can do more than just ‘survive’. They can ‘live’ and be a part of the community, and be the best version of themselves with the support and resources they deserve.
It is estimated that 1 in 12 Canadians are affected by a Rare Disease or Disorder; most of these, are life threatening or severely debilitating.
Helping those who are affected by Syringomyelia, Chiari Malformation and Rare Disease or Disorders is a community effort, its important for all of us to work together to help build our communities because Together We Are Stronger®.