Our virtual Community is a place to share, learn & support those affected with SM & CM, & the medical professionals that treat them.

Subscribe & Help Support SM & CM!

Subscribe to our Syringomyelia & Chiari Network, and help connect those affected with Syringomyelia & Chiari Malformation around the world. Membership to the site is Free - however, the cost to maintain the site is not. That is why we have decided to offer our members the opportunity to become contributing members through subscription for the small contribution of $15.00 per year.  As a contributing member, you will receive:

  • 1 Syringomyelia or Chiari Malformation Wristband
  • 2 Syringomyelia or Chiari Malformation brochure
  • A thank you letter for your support
  • Banner on personal SM/CM page that shows you as a subscription member
  • Network Membership (Access)
  • Network Chat Room (Access)
  • Online Support Group (Access)

Thank you for your support! For more information about our Subscription please <click here>

Awards (Carion Fenn)

Town of Ajax Accessible Award

Town of Ajax have selected our Founder, Carion Fenn, for the Accessibility Community Award for 2013. Shawn Collier, Regional Councillor presented Carion Fenn with the Accessibility Award. 

SM & CM Awareness Products

Wristbands <Click Here> 

T-Shirt: <Click Here> 

Cards: <Click Here>

Order your products today and help support our causes. 

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Rogers TV- Talk Durham Nov. 27/13

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

Talk Durham - Rogers TV- Channel

Debra Talked to Carion, members of our social  network (NancyKellie), & Callers including Jamie McDonald, Sue, Harlen & 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. 

A full copy of the show can be ordered by clicking the below link: 

Rogers TV Dub Request (Click here)

MP Chris Alexander & Carion Fenn

Carion Fenn(Left), Founder of Carion Fenn Syringomyelia & Chiari Network with Chris Alexander, Canada's Minister of Citizenship and Immigration & (MP) Member of Parliament Ajax-Pickering at the Chris Alexander MP's Fall Fete September 22, 2013. 

Proclamation Received

Town of Ajax - (Mayor Steve Parish)
City of Toronto - (Mayor Rob Ford)
City of Oshawa - (Mayor John Henry) 
City of Markham - (Mayor Scarpitti)
City of Pickering - (Mayor David Ryan) 
Town of Oakville - (Mayor Rob Burton) 
Syringomyelia & Chiari Malformation dates July 17 and September formally recognized by the Town of AJAX, On Canada Mayor Steve Parish for the first time in Canadian History in 2013. 

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Latest Activity

Member (SM)
Joanne Mclaughlin SM commented on Syringomyelia & Chiari Network's group Rhode Island Network
"Thank you for the invite!"
1 hour ago

Member (SM)
Joanne Mclaughlin SM joined Syringomyelia & Chiari Network's group

Rhode Island Network

Rhode Island NetworkWelcome to Rhode Island Network, A Network Group in Rhode Island USA for all…See More
1 hour ago

Member (SM)
Shie Weaver posted a discussion

Needing Help.

After all these years of thinking i was getting the treatment i rightfully deserved for my SM... I…See More
9 hours ago

Member (CM)
Mervin Webb posted a blog post

A Mervelous Journey (2.7)

The 2015 Crossfit Open has started and now you will see the improvements that are made since my Sub…See More
10 hours ago


 SM & CM Statistics (Social Network):


We welcome and need those who suffer with Syringomyelia and Chiari Malformation to join our Social Network.  This will enable us to provide a more accurate count of people living with these conditions.  In addition, it will give people the opportunity to find someone in their area who shares these conditions.  The social network allows you to see how many people in a specific country, state or province has our conditions. Your membership is important to us and we want to ensure that you have the statistics and information you need. 

Blog Posts

A Mervelous Journey (2.7)

Posted by Mervin Webb on March 1, 2015 at 10:38pm 0 Comments

The 2015 Crossfit Open has started and now you will see the improvements that are made since my Sub Cranial Decompression Surgery (Chiari Malformation) on July 13th, 2014. This is the first of five episodes dedicated to reconstructing my fitness…


MRI Scans

Posted by Diane Quesnelle (SM) on February 4, 2015 at 2:48pm 5 Comments

Hi everyone.

I know there are no doctors or nurses that are on here or that want to give medical advice, i'm just looking for an opinion.  I promise not to hold you to it.   I have attached 3 slices of an old scan that I have been looking…



Needing Help.

After all these years of thinking i was getting the treatment i rightfully deserved for my SM... I literally read through my files and found im just a research paper for my neurologist!!! It took me over a year to find him because everyone turned me…Continue

Started by Shie Weaver 9 hours ago.

How do people in your family understand the level of pain you are going through? 11 Replies

I have a question for everyone that is experiencing pain caused by Syringomyelia. How do your loved ones, signigicant other understand the level of pain you are going through, how do you explain it to them and how do they help you?

Started by Irina Dell. Last reply by Christine Webb (SM) USA REP yesterday.

Clinic in Barcelona claims to have a cure!!! 11 Replies

This is a bit long but here it goes,A little background on me: In my professional life, I was a Quality Engineer, it's in my blood. I started at the bottom and worked my way up, the old fashion way. It's also my personality type that drove me to the…Continue

Started by SM Debiann. Last reply by Janet Halberstadt SM Feb 18.

Hydromyelia vs Syringomyelia 5 Replies

I asked a prof recently about the enlarged central canal that was found on my mrt.hes a specialist on sm and told me what I have isnt sm but enlarged central canal.that it is completely unproblematic and almost NEVER turns into sm. it is central and…Continue

Started by Mousse K (SM). Last reply by Christine Webb (SM) USA REP Feb 17.



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    Jamie McDonald Fundraising Adventurer

    How I Became a Motivational Speaker

    The question I’ve been answering a lot at the minute, “how are you funding yourself, how are you earning?” I get the impression that people feel a little cheeky asking, but as it’s come up so many times, I wanted to share something with you. Some of you may know that I’ve used my own...

    BiG Awards: Ambassador of the Year

    Having been shortlisted for the Believe in Gloucester Awards: Ambassador of the Year - I felt incredibly honoured, and very proud – but to of been awarded with this accolade, well, its simply overwhelming. And a little mad I might add, as I’m not even sure what an Ambassador does/or is supposed to do! My Mum, Dad, cousin...

    Surprise Surprise ITV

    It’s about time I told you all about my ITV ‘Surprise Surprise’ experience, how they done me like a kipper, and how it felt to share my story with 5 million people. The amazing Wendy Fabian, was the person that secretly applied for me to go on the show, alongside over 20,000 other applicants –...



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    Carion Fenn Foundation

    Carion Fenn Foundation coming soon, we are thankful for the support of the Patti Dawson Award, making it possible to have a foundation that will help provide support around the world, help increase awareness about Syringomyelia & Chiari Malformation. 


    Petition to the Government of Canada and Members of Parliament: 

    We are in the process of petitioning The Government of Canada and Members of Parliament to recognize our Syringomyelia & Chiari Malformation Day July 17 and the Month of September Federally:

    We had the opportunity to collect signatures which was a great success and we thank those who helped us collect signatures. We thank MP Chris Alexander's office for their help and guidance in getting our petition presented to The Government and Canada and Members of Parliament. We are hoping this will be recognized so that we can help further our causes and help make a difference.  

    Special thank you to the following people or local Network for their help in helping us to collect Signatures to Petition the Canadian Government/ Parliament to recognize our conditions federally: 

    Local Network

    St. Catherine's, ON Canada (Lori Hart)

    Nicole McFadden

    Ken Anderson

    Mary Rudy

    Jeremy Webb



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