Charity 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

Marcia Bowens

Event Manager

Michelle De Lyon

President - Executive Assistant & Support Manager

Tejus Tuppal

Program Co-ordinator

  • Become a Registered Charity April 1, 2017. 
  • Participated in: Pickering Rotary RibFest 2017 & 2016, Town of Ajax Accessibility (3rd Annual NAAW) Night, CARP Healthy Lifestyle  and Town of Ajax Senoirs BBQ. 
  • Town of Ajax: Impact Ajax (May 2016) Support - Rare Disease Expo 2016
  • Launch First Bowl 4 Rare Diseases Fundraiser with Edgar's Ink & Toner. (April 2016)
  • Host Michael Harris First #treatraredisease Tour in Ajax, ON Ajax Public Library. (January 2016)
  • Start the first Rare Disease Support Group Meetings in Partnership with Ajax Public Library. (January 2016)
  • Became a Registered Not-For-Profit  Corporation (April 2015)

Our 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.

​We provide support through our monthly Rare Disease Support Group Meetings in partnership with Ajax Public Library and Carion Fenn Network a place to share, learn and support each other. We educate the public through flag raisings, proclamtions, television interviews, Newspaper, Bowl for Rare Disease Fundraiser, Karaoke Fundraiser and provide resources through our Rare Disease Expo Supported by Town or Ajax, Mental Health Forum in partnership with Ajax Public Library, Flag Raisings and Proclamations. 

Our Founder

Foundation History

Team Leaders:

Donna Mullings



Lori Hart

​Support Manager

Carion is an award winning advocate receiving the Spinal Cord Injury Ontario (SCI-ON) & University Health Network (UHN) Patti Dawson Award, Ajax Civic Award from Town of Ajax, Advocacy Award from Abilities Awardand the Accessibility Community Award from the Town of Ajax. She is also an Interior Decorator/ Designer, currently serving her 2nd term on the Town of Ajax Accessibility Advisory Committee and a member of the Rotary Club of Ajax. 

Mission: 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

​Carion Fenn Foundation is a Registered Charity established to educate, support and provide resources for Rare Disease Management for Syringomyelia (SM), Chiari Malformation (CM), EDS, Arthritis, Epilepsy, Cancer, LAM, Autism, Fibro 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 while educating the public. 

​​​Our foundation was founded by award winning inclusiveness and accessibility advocate Carion Fenn, recipient of The Ontario Volunteer Service Award (10yrs), Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Ajax Civic Award & Accessibility Award, and Abilities Awards - Advocacy Award.​ Founder, Carion Fenn, is also a member of the Town of Ajax Accessibility Advisory Committee and Rotary Club of Ajax. 

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! The Vision of the foundation is to reach a point where no Rare Disease sufferer has to go through their illnesses alone, or without needed support systems and resources.

Beverly Holtzman

Support Co-ordinator

Carion Fenn is the Founder & President of the Carion Fenn Foundation & Carion Fenn Network, and the architect behind Rare Disease Support Group Meetings in Partnership with Ajax Public Library and the Rare Disease Expo in supported by the Town of Ajax. 

Kianna Haughton

Vice Chair