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.

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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
  • 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 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. 




Upcoming Events:

Please sign our petition to recognize Rare Disease Day in Canada


Thank you. Carion Fenn

1) Patient To Patient Let's Talk Support Group Meeting

March 8, 2018 at 6:30pm to 8:30pm

Host: Carion Fenn Foundation in partnership with Ajax Public Library 

Join the discussion at Ajax Public Library or through Skype online:

Ajax Public Library (Main Branch, Rotary Room): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.


 2) Watch Health 180 with Carion Fenn on Rogers TV Durham, Channel 10 or the Live Broadcast online. 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.

3) Mental Health Symposium: May 8, 2018 (Town of Ajax), for details <click here>

Latest Activity

Member (SM)
Phillip R. (SM) posted a photo

Member (SM)
Phillip R. (SM) updated their profile

Member (SM)
Phillip R. (SM) joined Carion Fenn's group

Dietitians Corner

Are you thinking about living a healthier life with Chronic Pain? Arthritis ? A Dietitian can help…See More

Subscriber (SM/CM)
Carion Fenn posted a blog post

Sign the petition to recognize Rare Disease Day in Canada

I need your help in signing our petition to recognize Rare Disease Day in #Canada. 350 Million…See More

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

Sign the petition to recognize Rare Disease Day in Canada

Posted by Carion Fenn on March 19, 2018 at 9:59pm 0 Comments

I need your help in signing our petition to recognize Rare Disease Day in #Canada. 350 Million people globally are fighting rare diseases. Let's do this for our #future generations. Please ask your family and friends to join in and help make a…


Go Canada Go !

Posted by Ken Anderson [sm] on March 9, 2018 at 1:18pm 1 Comment

Comrades, Lets hear some support for our athletes, the Red White and Black Paralympic Team !!

Years back I played on the Canadian Team and what a fun time it was. The camaraderie with teammates, the thrill of victory and the agony…


Long time since I've posted

Posted by Lydia Leeson SM on February 16, 2018 at 5:55am 5 Comments

For those who don't know, I hit my head at work and a year later, after fighting to find answers I was diagnosed with SM.

I was depressed and angry, but found solice in this group. I slowly overcame my depression, and learned to have some… Continue

IV Lidocaine

Posted by Glenn Brace(SM) on February 11, 2018 at 8:44am 3 Comments

Hey. I have an appointment with Pain Management tomorrow for an IV Lidocaine injection for pain to my lumbar spine.  My syrinx/shunt is at T9 but I have multiple bulging degenerative discs in my lumbar and cervical areas as well. Plus…



Loooking for some help 1 Reply

I have had syringomyelia for about 3 or 4 yrs now it has progressed at a pretty fast state.  I truly do not understand why just basic walking and a little bit of force at work causes this disease to progress so fast and i now know it is because that…Continue

Started by Brian Macdonald in Sample Title. Last reply by Jill McLaren Mar 15.

Shunts 15 Replies

G'day All,                I was seeking feedback on Shunts, how many people have had success or nothing but issues with them. I had my 12 month visit with my Nero surgeon and 12 month MRI, it is showing my Syrinx has now enter my neck region and as…Continue

Started by Shaun Kelly in Uncategorized. Last reply by Glenn Brace(SM) Mar 7.

small syrinx, lots of symptoms, anything else to consider?? 1 Reply

Hello everyone, I've posted here before and got some very  useful information from a number of members. My story is a long one but i will try to make it short. 10 years ago i noticed a lot of unusual fatigue and perceived  weakness in my legs, …Continue

Tags: fatigue, weakness, als, mnd, syrinx

Started by Matt Boczkowski in Uncategorized. Last reply by Jill McLaren Feb 24.

Pregnancy and Delivery

I am looking for some information from anyone with syringomyelia that have been pregnant and their delivery choice. My daughter has Syringomyelia and is pregnant with her first child. Some doctors say it is safe to have natural birth while others…Continue

Started by Corrine in Sample Title Jan 29.


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