Charity 802775791RR0001

​​​​​​​OCTOBER 10, 2017 5PM - 9PM

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

Everyday Mental Health & Wellness Talk

  • ​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: October 12, 2017 6:30PM​​

Our Partners & Supporters

​​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. 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. 

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).

​Rare Diseases (Global Genes)

~ 350 Million people globally are fighting rare diseases

~ Rare Diseases Impact more people than aid and cancer combined

~ Approximately 50% of the people affected by rare diseases are children; 30% of children with rare           disease will not live to se     e their 5th birthday

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.

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.