syringomyelia, Chiari  Malformation & Rare Diseases

Central East (LHIN)  ​

  • Cervical dystonia
  • CHILD syndrome   
  • Chiari Malformation 
  • Cholesterol    
  • ​​​​Diabetes  
  • Dystonia
  • EDS          

Patient Empowerment Social Media & Homecare 

  • ​ALS
  • Alzheimer
  • Arthritis                    
  • Autism  
  • Bronchiolitis          
  • Cancer  
  • ​​​Cerebral palsy   ​
  • Hepatitis​​
  • ​NF (Neurofibromatosis)  
  • Paine syndrome
  • ​​​Syringomyelia  
  • Paraplegia
  • Parkinson 
  • Polio

​​​​​OCTOBER 10, 2017 5PM - 9PM

  • Epilepsy
  • Fibro 
  • Gallbladder
  • Glaucoma  
  • ​Headache  
  • Heart disease
  • Heart tumor   

​​​​​​Next Meeting: August 10, 2017 6:30PM​​

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. 

Simon Stones


Charity 802775791RR0001

Our Partners & Supporters