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

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. 

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. 



 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 at the click of a button in seconds - so please join us by clicking on the network button above.


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


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

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Sarah Lutze (SM) posted a blog post


I typically try to reflect this time of year because 12/26/07 is a day I'll never forget...the day…See More
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"Happy Birthday Nicole. Seasons Greetings. Love & Happiness! xoxox RJ (sm)"
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"Seasons Greetings James. Happiest of Birthdays to you! Love & Happiness!"
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"Danielle, Happy Birthday!! Love & Happiness! xoxo RJ (SM)"
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"Amy Happy Birthday! Love & Happiness xoxox RJ (sm) "
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"Happy Birthday Cherise! Have a great day! xoxox"
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Chiari Malformation (CM)

This group is for those who are living with Chiari Malformation. Please join, show your Chiarian…See More


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    Blog Posts


    Posted by Sarah Lutze (SM) on December 21, 2014 at 6:36pm 0 Comments

    I typically try to reflect this time of year because 12/26/07 is a day I'll never forget...the day I got the diagnosis of syringomyelia. I don't really remember life pre-sm because the last 7 years have been enough of a rollercoaster and enough…


    Abilities Awards (Check out our feature page)

    Posted by Syringomyelia & Chiari Network on December 19, 2014 at 5:57pm 0 Comments

    Please check out our feature page on the Abilities Award attended by our founder Carion Fenn who received the advocacy Award 2014. 



    New drug

    Posted by SM Debiann on December 5, 2014 at 10:47am 0 Comments

    http://www.capitalotc.com/new-drug-could-heal-spinal-cord-injuries/26268/ New drug could help repair spinal cord injuries, has anyone seen this? No knifes is a… Continue

    Online support Group to host 500+ people at the same time.

    Posted by Syringomyelia & Chiari Network on December 4, 2014 at 2:59pm 5 Comments

    So excited: we have someone who is currently building us the software to do our support group meeting with over 500 people and I found someone with the server to host the support group. Yay!! when this is done we will not use the…


    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 –...


    What does a syrinx mean? 4 Replies

    I have a 2mm syrinx from the top of my tailbone up to t5. Does having a syrinx mean you have syringomyelia and is something so small able to be the source of my pain?Continue

    Started by Autumn(SM). Last reply by Fleetlordatvar Nov 27.

    Sleep 1 Reply

    I am unable to sleep and my eyes are bugging out! I've tried a variety of things  any suggestions...shower, tea, massage, gravel, weed.What do I do?Exhausted and grumpy!Continue

    Started by Tammy Mohammed. Last reply by Jill McLaren (SM) Nov 17.


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