Charity 802775791RR0001

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. 

Our foundation is supported by The Rotary Club of Ajax, Ajax Legion and has community partnership such as the Ajax Public Library and AjaxPickering.ca.  

We advocate and raise awareness through flag raisings, municipal proclamations (Town of Ajax, City of Pickering and many more), television interviews (Rogers TV), Newspaper (Snapd, News Advertisers), Bowl for Rare Disease Fundraiser, and a Karaoke Fundraiser. The Foundation also provides resources through events such as Support Group Meetings, Rare Disease Expo, Mental Health Forum, symposiums, workshops and seminars. 

We support communities by partnering with organizations like the Ajax Public Library, where we hold a Monthly Rare Disease Support Group meeting. In addition to the Support Group meetings, the Carion Fenn Network is a unique social network, available 24 hours a day,  where patients, family and loved ones can share, learn and support each other.  

We provide resources about rare diseases, their affects, and how to assist those suffering by launching the first Rare Disease Expo supported by the Town of Ajax and sponsors by The Rotary Club of Pickering and Rare Patient Voice Canada.  

In recognition of International Mental Health Day, on October 10th, 2017 we will be hosting our first Mental Health Forum, in partnership with Ajax Public Library. This forum will include a Passport Session with participants such as Lakeridge Health, Ontario Shores, Durham Mental Health, Lam Canada, NF Ontario, Sankat Mochan Temple and more. The second half of the forum will include an expert panel with an audience and Q&A sessions. 

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®. 

Michelle De Lyon

Program Manager 

Tejus Tuppal

Event Manager

Charity Purpose:


1. To promote health by:

a. providing individuals with Syringomyelia and Chiari Malformation with support services such as peer support groups, counselling, educational workshops and seminars, and resources for chronic disease management; and

b. educating the public and individuals suffering from Syringomyelia and Chiari Malformation about rare diseases, their affects, and how to assist those suffering by hosting the Rare Disease Expo.

2.To do all such things as are incidental or ancillary to the attainment of the above purposes.

Our Founder

Advocacy, support & Resources

Mary

Funding Manager 

Team Leaders:

About Us

Lori Hart

​Support Manager


Mission Statement:

Our mission is to increase awareness, provide support and help find solutions in moving forward for those affected by Rare Diseases or Disorders such as Syringomyelia, Chairi Malformation and more. 

Carion Fenn

Founding President

Carion Fenn is the Founder & President of the Carion Fenn Foundation and Carion Fenn Network. An Award Winning inclusiveness and accessibility patient advocate. Carion is also a member of Lakeridge Health Board of Trustees, Town of Ajax Accessibility Advisory Committee, Rotary Club of Ajax and the recipient of the Ontario Volunteer Service (10yrs), Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax - Ajax Civic Aware & Accessibility Award, and Abilities Awards – Advocacy Award.­­­­­­

Ron Fenn

Vice President

Diane Bateman

Administrative Director

syringomyelia, Chiari  Malformation & Rare Diseases

Our Partners & Supporters