Charity 802775791RR0001

Airing on Rogers TV Durham Channel 10

​​Rare Diseases (Global Genes)


  • 350 Million people globally are fighting rare diseases.
  • Rare Diseases Impact more people than aids and cancer combined.
  • Approximately 50% of the people affected by rare diseases are children; 30% of children with rare disease will not live to see their 5th birthday.
  • Cervical dystonia
  • CHILD syndrome   
  • Chiari Malformation 
  • Cholesterol    
  • ​​​​Diabetes  
  • Dystonia
  • EDS          

Chronic Disease (Government of Canada)

  • Chronic diseases such as diabetes, cancer, arthritis, mental illness, and cardiovascular and chronic respiratory diseases are major contributors to reduced quality of life, loss of productivity, and increased hospitalization and health care costs as well as premature death in Canada.
  • Out of every 5 Canadians aged 20 years or older, 3 have a chronic disease and 4 are at risk of developing a chronic condition.
  • ​ALS
  • Alzheimer
  • Arthritis                    
  • Autism  
  • Bronchiolitis          
  • Cancer  
  • ​​​Cerebral palsy   ​
  • Hepatitis​​
  • ​NF (Neurofibromatosis)  
  • Paine syndrome
  • ​​​Syringomyelia  
  • Paraplegia
  • Parkinson 
  • Polio
  • Epilepsy
  • Familial Ataxias
  • Fibro 
  • Gallbladder
  • Glaucoma  
  • ​Headache  
  • Heart disease   

Next Meeting: December 14, 2017 6:30PM - 8:30PM


​Hard to Insure and How To Ensure Mood Management Over 
Frank Kennedy (Kennedy Intervention Services Inc)
Irene Anyanwu (Experior Financial Group Inc)
​​

Syringomyelia (NINDS)


  • There are two major forms of Syringomyelia, acquired and congenital.
  • Symptoms develop slowly over time and may occur on one or both sides of the body.  
  • Syringomyelia may also be caused by spinal cord injuries, spinal cord tumors, and damage caused by inflammation in around the spinal cord. In some cases, the cause is unknown (idiopathic).

Thank you to our partners, sponsors & supporters for helping us grow. Together We Are Stronger!

Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases. 

​Our foundation was founded by award winning inclusiveness and accessibility patient advocate Carion Fenn. Host of Health 180 with Carion Fenn on Rogers TV Durham. Carion is a Member of Lakeridge Health Board of Trustees, Board Quality Committee & Co-Chair Ajax Pickering Hospital Community Panel. She is a members of the Town of Ajax Accessibility Advisory Committee and The Rotary Club of Ajax.​


Carion has received several recognitions for her community service, including the Ontario Volunteer Service Award (10 YRS) from the Ontario Provincial Government, Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Adult, Ajax Civic Award, Education Award & Accessibility Award. Abilities Awards – Advocacy Award.

Chiari Malformation (NINDS)

  • Chiari Malformation has several different causes.
  • Later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to traumatic injury, disease, or infection. This is called acquired or secondary Chiari malformation. 
  • By structural defects in the brain and spinal cord that occur during fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients. This is called primary or congenital Chiari malformation.