A place to share, learn & Support Syringomyelia, Chiari Malformation, Rare Diseases, Loved Ones & Medical Community

Our Mission:

Our Mission: To share, learn and support those affected by Syringomyelia (SM) and Chiari Malformation (CM )while educating the public in hope of discovering a cure.

Change and Awareness starts with US! We can make a stronger impact when we work together, that's why we say, Together We Are Stronger (R).

Subscribe & Help Build our Community!

Please click on the Subscribe button to 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: Awareness Wristbands, Brochures, Thank you Letter, Banner on personal SM/CM page, Access to missed online Support Group Meetings & more. For more information about our Subscription or give a donation please <click here>

Thank you for your support! 

Wrisbands: Syringomyelia & Chiari

Help support our causes by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands: Blue, Purple, and Red. Order Now & Help Support our Causes. 

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

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

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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. 

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What is Syringomyelia & Chiari Malformation?

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.

Chiari Malformations (CM) (Key-Ar-ee-mal-for-MAY-shun); are structural defects in the cerebellum, the part of the brain that controls balance. 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. 

Latest Activity

Ashleigj replied to Syringomyelia & Chiari Network's discussion Volunteers Needed: Rare Disease Expo 2016
"I would only be able to do it if travel expenses and lodging expenses were covered. Please let me…"
8 hours ago
Leigh Burton is now a member of Syringomyelia & Chiari Network
18 hours ago
Profile IconDiane Quesnelle (SM) and Martha M Burns joined Syringomyelia & Chiari Network's group

Rare Disease Expo

Carion Fenn Foundation Rare Disease Expo in partnership with Town of Ajax February 27, 2016 12pm at…See More

Subscriber (SM)
Martha M Burns joined Syringomyelia & Chiari Network's group

Support Group Meetings

Support Group Meetings:  Our Support Group Meetings are set up to help those living with…See More

Want to know what's happening? Follow Carion Fenn on Twitter @carionfenn

New Article: News Advertisers

Volunteering has made Fenn top Ajax citizen
Article by Keith Gilligan, News Advertisers. Our Founder Carion Fenn won the Town of Ajax highest honour: Ajax Civic Award. 


Please subscribe to our Network to help build our community, increase awareness in hopes of finding a cure. 

Help keep us going with our 2015 Together We Are Stronger Campaign. 

Blog Posts

What happens next?

Posted by Heather S on November 20, 2015 at 1:22pm 2 Comments

Hi everyone, my name is Heather. I was told this morning that I have a Syrinx and my PCP would like me to have a Thoracic MRI asap. I had an MRI last week, to rule out epidural abscess. I'm a 43 yr old single mom, I'm terrified. I've been prescribed… Continue

Beginning symptoms with a Syrinx?

Posted by Lorena Johnson on November 15, 2015 at 7:24pm 1 Comment

I want to ask members what symptoms did you start out with? I have a small syrinx in my neck. I have a very stiff neck and can move it only a short distance in either direction. I have had transient pains on the left side of my neck and at the…


One day at a time

Posted by Lynda Williams on November 15, 2015 at 6:11pm 1 Comment

I went back to my NS after all my MRIs, he told me I have good new there are no tumors,  so I asked what caused my syrnix, he said well you have a herniated disc just below, that is probably the cause.  What about my pain in am back and arms.  He…


as the days go on

Posted by Ashley Matos on November 7, 2015 at 2:41am 2 Comments

as the days go on sometimes i feel as if there is nothing wrong with me, that maybe it is my mind playing tricks on me but then the following day comes and as i prepare myself for it i realize i need longer to get ready, longer to wake, longer to…



Volunteers Needed: Rare Disease Expo 2016 1 Reply

Carion Fenn Foundation Rare Disease Expo in partnership with Town…Continue

Started by Syringomyelia & Chiari Network. Last reply by Ashleigj 8 hours ago.

Apology to the support group meeting

Hi, I wanted to apologize to the people at the support group meeting. I am vision impaired, so I have to practice with  my screenreader to learn to navigate my way around on the computer. The google play must have been new so when I logged on trying…Continue

Started by Betty Corey on Sunday.

Does anyone have Multiple Sclerosis or have they ever been tested for it?

My primary care doctor suggested that when I meet with the neurologist who to ask her to rule out MS as a cause of my syrinx. Has anyone else been told this?

Started by Teresa Nov 19.

Advice 1 Reply

Went to a neurologist today who told me that my syrinx is to small to cause any problems. In the last year, I've had intense pressure and itching in my face, constant headaches, blurred vision, slurred speech, difficulty concentrating in addition to…Continue

Started by Amber Wood. Last reply by Teresa Nov 17.

Top Discussions 

1 Blood running way too low,

Blood running way too low,

Posted by Betty Corey on November 15, 2015

2 Telling the public

Telling the public

Posted by Haley Steinbach on September 1, 2015

3 Recently diagnosed with a syrinx... Need help and info

Recently diagnosed with a syrinx... Need help and info

Posted by Lauren Pace on November 13, 2015


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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. 

Carion Fenn Foundation

Carion Fenn Foundation is a Non Profit Corporation, 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



Our websites are intended for information purposes only and may or may not apply to you. We are not doctors and we do not give medical advice. We do not endorse any doctors, products or procedures. Always consult a qualified medical professional for medical care. Please refer to our terms of service before using our sites.  Terms of  Service


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