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.

Connect with others!

Welcome to our Network

Welcome to our network. Glad you are here with us. Feel free to browse around and get to know our community. You can read other members profiles to see what they are going through, what treatment or medications they are trying and how they have been coping. Have questions? Want to hear from others or engage with our members? Start a blog, forum or join our groups. At the top of our website are tabs to help you get familiar with our network. Check out our events page for upcoming events, like our monthly support group educational workshops with others as well as experts giving a presentation at each meeting. You can join the meeting using Skype or at the Ajax Public Library Main Branch. Membership to our network is free, however you can become a subscriber or donate to help build our network and support our community. Details to your left and scroll up or down. Also available is information for you get your wristband to help increase awareness. Again, welcome to our community. No one should every be alone with an ailments and its important to get support and support each other because Together We Are Stronger. God Bless. Carion Fenn 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. We are asking members to become subscribers for $20 yearly since the cost to maintain the network is not free. Join in helping to 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
  • Behind the scenes footage of Health 180 with Carion Fenn. 
  • Support Group Meeting Expert Presentation Slideshows. (Access)
  • Subscriber Banner on Profile Picture
  • Access to Blogs and Forum about Health 180 with Carion Fenn TV Show Episodes. 

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 donation 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. 






December 13


Latest Activity

rexlinemouliya is now a member of Carion Fenn Network
1 hour ago

Subscriber (SM/CM)
Carion Fenn Network left a comment for Karletha Gilliam
"Happy birthday! Hope you enjoy your special day and you’re doing as best as possible. No one…"

Subscriber (SM/CM)
Carion Fenn Network left a comment for Madhvi Gupta (SM)
"Happy birthday! Hope you enjoy your special day and you’re doing as best as possible. No one…"

Subscriber (SM/CM)
Carion Fenn Network left a comment for Carrie
"Happy birthday! Hope you enjoy your special day and you’re doing as best as possible. No one…"

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

Seasonal Affective Disorder

Posted by Carion Fenn Network on November 29, 2018 at 12:17pm 1 Comment

Hi everyone, 

Since the Carion Fenn Foundation is hosting a support group meeting next month relating to seasonal anxiety, this would be a good time to bring up the topic of seasonal affective disorder/ seasonal…


Is being a night owl bad for your health?

Posted by Carion Fenn Network on November 15, 2018 at 11:30am 0 Comments

On a recent segment on the TV show "The Doctors", the hosts discussed whether or not staying up late is bad for your health. One of the hosts mentioned that this habit is associated with other qualities that could lead to poor health, such as…


Marijuana use

Posted by Carion Fenn Network on November 1, 2018 at 1:09pm 10 Comments

Recreational marijuana was legalized in Canada on October 17, which brings up an interesting topic: medical marijuana use.

Has anyone tried marijuana for pain relief or other conditions?

Did it help? Do you still use it…


My E-Petition to the #GovernmentofCanada to recognize Rare Disease Day Federally will be presented 3pm eastern today by MP @MPCelina.

Posted by Carion Fenn Network on September 19, 2018 at 2:30pm 0 Comments

My E-Petition to the #GovernmentofCanada to recognize Rare Disease Day Federally will be presented 3pm eastern today by MP @MPCelina. I stand with our #raredisease community & I hope our will government will too.…




Hello everyone,I have been have on and off problems with breathing and ticklish throat also get a dry mouth at night while sleeping, I have noticed my neck around my throat area has become enlarged. I am wondering anyone experience thyroid problems…Continue

Started by Shaun Kelly in Sample Title Nov 15.

Reflux Abdomen pain 4 Replies

Looking for help advice,I am suffering from bad reflux abdomen pain been going on for about a year now.I have had the camera treatment and say nothing wrong and is to to with my syrinx. I have tumor T9 to T11 and my syrinx is elongates the full…Continue

Started by Shaun Kelly in Uncategorized. Last reply by Shaun Kelly Nov 8.

We Need to Talk 13 Replies

G'day Everyone,                           I am concerned at the lack of discussion on this site and wonder why discussion has drop off. I have found this site the best for it. I have tried the facebook sites etc but find they do not have the same…Continue

Started by Shaun Kelly in Uncategorized. Last reply by Shaun Kelly Oct 27.

Stem Cell Treatment

Has anyone out there ever tried stem cell treatment for Syringomyelia or syrinxes?  If so was was your experience?  Continue

Started by Pennee Kirchhausen in Sample Title Oct 27.

Top Discussions 

1 SCAMMER among us

SCAMMER among us

Posted by Kelly Eckstein on August 10, 2017


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