Welcome to Carion Fenn Network. A place to share, learn & support. (Syringomyelia/Chiari Malformation/ Rare & Chronic Diseases & Seniors)

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. 


Donate & Receive a Mental Health T-Shirt





February 27


Latest Activity

Cheryl Pitter left a comment for Elizabeth Marie Paul
"On behalf of the foundation Elizabeth, we wish you a very Happy Birthday."
8 hours ago
Cheryl Pitter left a comment for Crystal
"On behalf of the foundation Crystal, we wish you a very happy Birthday."
8 hours ago
Cheryl Pitter left a comment for allison lee powter(SM)
"On behalf of the foundation Allison, we wish you a very Happy Birthday."
8 hours ago
Cheryl Pitter left a comment for Allie Powter ( SM )
"On behalf of the foundation Allie, we wish you a very Happy Birthday."
8 hours ago

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. 

Health 180 with Carion Fenn on Rogers TV Durham

​​​​​​​​​​​Health 180 with Carion Fenn is a tv show on Rogers TV Durham, examining healthcare options in Durham Region through patient stories, doctor and expert health & wellness advice to help you live your healthiest life. We cover a wide range of topics on ailments that are affecting the community and address the concerns from the general public. Carion talks to both doctors and health experts on treatments or tips that are best for viewers and addresses any preventative measures that can be taken.​​​ You can watch the show online through the below links. The show is available Daily at https://www.rogerstv.com/show?lid=12&rid=2&sid=7713

Spinal Bifida: https://www.rogerstv.com/show?lid=12&rid=2&sid=7713&gid=307023 

Tea Talk for health and wellnesshttps://www.rogerstv.com/show?lid=12&rid=2&sid=7713&gid=307887 

The long road back following a fire at Lakeridge Health, Port Perry. https://www.rogerstv.com/show?lid=12&rid=2&sid=7713&gid=308722

The Shoulder Centre at Lakeridge Health.https://www.rogerstv.com/show?lid=12&rid=2&sid=7713&gid=309512 

Thank you for watching. If you are local and would like to share your story, please reach out to me. We are currently in talks with Rogers TV Durham for a third season. 

Carion Fenn

www.carionfenn.com ;

Blog Posts

Seasons greetings from our family to yours. Wishing you a safe and healthy Holidays. May god bless you and your family; keep you safe through Covid-19 and we wish you the best in 2021. This year give…

Posted by Carion Fenn Network on December 25, 2020 at 6:16pm 0 Comments

Seasons greetings from our family to yours. Wishing you a safe and healthy Holidays. May god bless you and your family; keep you safe through Covid-19 and we wish you the best…


Covid-19 Vaccine is out today, would you take it?

Posted by Carion Fenn Network on December 14, 2020 at 2:32pm 2 Comments

Hello everyone, 

Now that the Covid-19 is being distributed, those impacted with rare or chronic conditions are among the most vulnerable. Would you take the vaccine? Would love to hear your thoughts on this. 

Pregnant and curious

Posted by Sylva Cassells on November 19, 2020 at 12:56pm 5 Comments

I'm currently expecting my first child.  It is still very early.  (Only 10 weeks). I know many of you out there have had kids.  What should I expect?

I had my first OBGyn appointment and she suggested I would get an epidural, and…


How are you coping through Covid-19?

Posted by Carion Fenn Network on October 26, 2020 at 3:27am 0 Comments

Dealing with our conditions isn't easy. Managing pain and symptoms, not having treatments needed, financial stress and adjusting to this new norm. How are you coping. How are handling your pain? 

Would love to hear your thoughts…



Virtual activities for seniors during Covid-19

Carion Fenn Foundation is launching a 12 week seniors program and looking for your ideas on what virtual programs can be done during Covid-19 to help our seniors community. Would love to heard your suggestions. Continue

Tags: seniors, virtualseniorsprogram, seniorsprogram

Started by Carion Fenn Network in Sample Title Oct 14, 2020.

Thyroid 2 Replies

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. Last reply by Shaun Kelly Dec 14, 2018.

Osteopath 5 Replies

I am thinking of going to see an osteopath.  I would sincerely appreciate your personal experience if you have sm and have seen an osteopath.  Can seeing an osteopath harm us?Just do not know what to do anymore.....Waiting anxiously!MaryContinue

Started by Mary Rudy (SM) in Sample Title. Last reply by Mary Rudy (SM) Dec 14, 2018.

Stem Cell Treatment 1 Reply

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. Last reply by Carion Fenn Network Dec 14, 2018.

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SCAMMER among us

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