Carion Fenn Network

Watch Health 180 with Carion Fenn RogersTV Durham Channel 10 Tuesdays 6:30pm Est

Syringomyelia, Chiari Malformation, Rare & Chronic Diseases Support Community. A place to share, learn & support each other worldwide.

Connecting to our Network

Subscribe to our Network

The Carion Fenn Network has worked hard over the past 9 years to provide the support and resources you need so that you would not have to go through this alone. The cost to maintain the network is not free, which is why we are asking members to become Subscribers for the small contribution of $20 yearly to help us maintain support and keep providing our community worldwide.

Subscription Includes:

  •  1 Year Subscription
  • Feature your Story in Newsletter (Optional)
  • Be a guest on TV Show (Optional)
  • Feature Member Listing
  • Support Group Meeting Expert Presentation Slideshows. (Access)
  • Subscriber Banner on Profile Picture

It's the responsibility of our subscribers to take the initiative to be apart of the optional features. Feature for newsletter or TV Show will be through a selection process of subscribers. Thank you for your support!

<Click here> to join our Subscriber Group after payment. 

Donate to Support our Network

Carion Fenn Network focuses on providing the platform for our members to support each other. With your contribution, you are helping our team provide educational information, helpful resources, and provide support to our members needed to navigate their ailments. Every donations matters in ensuring that our network is available to everyone. Keep in mind that we do have members who can't afford to subscribe or donate who need the support so if you can donate, please do so that someone who can't may continue to have the support they need.


Order your Wristbands NOW

Show Support for your cause(s):

Help support our Network & its innitiatives by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands custom designed by those affected: Blue and Purple. Order Now!


Syringomyelia & Chiari Wristband



Town of Ajax Ajax Civic Award (Adult) 2014 winner Carion Fenn.

Spinal Cord Injury (Ontario) & University Health Network (UHN) Patti Dawson Award. 

Abilities Awards: Advocacy Award 2014

Debra Hutchison (Host Rogers TV- Talk Durham), Nancy (CFSCN Member), Carion Fenn (Founder), Carion Fenn Syringomyelia & Chiari Network), & Kellie (CFSCN Member).

Debra Talked to Carion, members of our social  network (Nancy & Kellie), & Callers including Jamie McDonaldSueHarlen & Christine about the issues faced with living with Syringomyelia & Chiari Malformation. We will have segments available online soon. The response was that the show was very informative, and a great resource to help educate others. Click on the thumbnail below to view videos. 


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Events Coming Soon

Mental Health Symposium - May 2018

Mental Health Forum - October 10, 2018

Health Expo April 7, 2019

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Next Support Group Meeting on Reiki Healing, January 11 2017 6:30PM - 8:30PM EST

Presenter: Ashleigh Brackin, Reiki Master & Instructor (Healing Connections Reiki)

Host: Carion Fenn Foundation in partnership with Ajax Public Library 

How to access our Support Group Meeting:

1) Location - Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.

2) Online - Skype: 

Watch Health 180 with Carion Fenn on Rogers TV Durham, Channel 10 Tuesdays at 6:30pm. Health 180 with Carion Fenn, explores healthcare providing health tips, patient stories and expert advice for anyone interested in health, wellness and living their healthiest life on Rogers TV Durham Channel 10.

Latest Activity

Network Moderator 1 and Carion Fenn Network are now friends
58 minutes ago
Network Moderator 1 updated their profile
59 minutes ago

Member (SM)
Josie Schembri replied to Carion Fenn Network's discussion Do you know a good Neurosurgeon?
"Dr Todd Mainprize from Sunnybrooke Hospital in Toronto. I have seen him once, so hard to judge how…"
7 hours ago

Member (SM)
Guy Tortorici replied to Carion Fenn Network's discussion Do you know a good Neurosurgeon?
"Apologies, maybe I should have said minimally invasive which is what they say on the Barcelona…"

Our Global Causes

Syringomyelia (SM) Sear-IN-go-my-EEL-ya: also known as SM, is a Syrinx (also known as a tubular filled cyst) that forms inside of the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the center of the spinal cord. 

  • 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).

Chiari Malformation (CM) Key-Ar-ee-mal-for-MAY-shun: When the “tonsils” of the brain stem fall below the base of the skull, it cuts off or blocks the flow of Cerebral Spinal Fluid that runs between the brain and the spinal cord. 

  • 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.  

Rare Disease: There are over 7000 known rare diseases/disorders. 1 in 12 Canadians will be affected by a rare disease. Rare in the USA, when it affects fewer than 200,000 Americans at any given time. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. 

  • 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.

Chronic Disease: A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. 

  • 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.

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. 

Blog Posts

We are sad to announce the passing of our member Michael J. Shepich.

Posted by Carion Fenn Network on December 20, 2017 at 9:21pm 4 Comments

We are sad announce the passing of our Network member Michael J. Shepich. But happy another angel got his wings. Michael…


Do you know someone famous who is affected by an ailment?

Posted by Carion Fenn Network on November 25, 2017 at 10:08pm 2 Comments

Do you guys know any basketball, hockey, tennis, football, gymnast, musician, actor, singer, etc who is affected by an ailment, condition, rare disease, rare disorder, injury etc. Please do share. Would love to know for my tv show Health 180 With… Continue

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:34pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…


Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:34pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…



Do you know a good Neurosurgeon? 13 Replies

Do you know a good Neurosurgeon in GTA? My Rock star neurosurgeons office won't return my call. But I have heard so my stories about patient calls not being returns and the treatments. Someone familiar with Syringomyelia & Chiari Malformation.…Continue

Started by Carion Fenn Network in Sample Title. Last reply by Josie Schembri 7 hours ago.


G'day All,                I was wondering if someone can explain the term Decompression and what it is used for, is this the same as the shunt process.Continue

Started by Shaun Kelly in Sample Title on Sunday.

Hello anyone out there 22 Replies

I feel very lonely on this site, no one talks anymore. Has there been a cure and someone forgotten to tell the little fella from down under.My condition keeps changing, I had been reasonably lucky till this point only using a small amount of pain…Continue

Started by Shaun Kelly in Uncategorized. Last reply by Christine Jan 2.

Ask on Health 180 with Carion Fenn (Rogers TV Durham, TV Show)

Ask on Health 180 with Carion FennRogers TV Durham TV ShowGot…Continue

Tags: Durham, TV, patient, durham, tips

Started by Carion Fenn Network in Uncategorized Dec 28, 2017.


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