Syringomyelia, Chiari Malformation & Accessibility. A place to share, learn & Support each other because Together We Are Stronger (R)

Our Mission:

To promote, educate, share, learn and support those living with Syringomyelia (SM) and Chiari Malformation (CM), their loved ones, and their treating medical team while educating the public in hope of discovering a cure.

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:

  • 2 Syringomyelia or Chiari Malformation Wristbands.
  • 2 Syringomyelia or Chiari Malformation brochures.
  • Thank you letter for your support.  
  • Banner on personal SM/CM page that shows you as a subscription member
  • Network Membership (Access)
  • Access to missed Online Support Group Meetings.
  • Direct invite to our Online Support Group & more.

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

SUPPORT The Syringomyelia & Chiari Network: Together We are Stronger Campaign!


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.

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. 


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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

Joanne Varey is now a member of Syringomyelia & Chiari Network
26 minutes ago

Member (CM)
Rebecca commented on Syringomyelia & Chiari Network's group Rare Conditions Network
"Hi Shelia. I can not offer any advice on these areas but I can offer my prayers. Glad you are with…"
1 hour ago
Sheila DiFonzo commented on Syringomyelia & Chiari Network's group Rare Conditions Network
"My name is Sheila and I have SM and a herniated spinal cord. I was diagnosed seven years ago.My…"
9 hours ago
Sheila DiFonzo joined Syringomyelia & Chiari Network's group

Rare Conditions Network

Welcome to the Rare Conditions Network. The object of this group is to link all those with rare…See More
9 hours ago

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, our donate to help build our community, increase awareness in hopes of finding a cure. 

Donate and help keep us going with our 2015 Campaign. 

Blog Posts

Help Build our Community & Support our 2015 Awareness Campaign

Posted by Syringomyelia & Chiari Network on May 24, 2015 at 11:00am 0 Comments

We are so glad that you have joined us on the journey to understanding and dealing with Syringomyelia and Chiari Malformation. These are conditions that should not have to be faced alone. Our site is supported completely by…


Next Support Group Meeting May 30, 2015 4pm Est We are here for you!

Posted by Syringomyelia & Chiari Network on May 24, 2015 at 10:53am 0 Comments

Next Support Group Meeting May 30, 2015 4pm Est We are here for you!

Carion Fenn Foundation & Syringomyelia & Chiari Network Present: Our Next Support Group Meeting May 30, 2015 4pm-6pm. Join us, we are talking about learning to…


Logo (your opinions required)

Posted by Syringomyelia & Chiari Network on May 15, 2015 at 11:00am 14 Comments

We need your help to figure out which logo to use in terms of the design and the fonts. Please give me your feedback on the below logos options 1 - 3. This logo will be be used for Syringomyelia & Chiari Network & Carion Fenn Foundation.…



To cut hair or not to cut hair for decompression surgery? 1 Reply

My wife will be having the decompression surgery within the next couple weeks. The NS said that they will be cutting a section of hair out from the back of her head. The section he mentioned is fairly large. They will also have electrodes on her…Continue

Started by PrinceK. Last reply by Abby yesterday.

Next Support Group Meeting May 30, 2015 4pm Est We are here for you!

Next Support Group Meeting May 30, 2015 4pm Est We are here for you!Carion Fenn Foundation & Syringomyelia & Chiari Network Present: Our Next Support Group Meeting May 30, 2015 4pm-6pm. Join us, we are talking about learning to accept the…Continue

Tags: malformation, syrinx, chiari, syringomyelia, group

Started by Syringomyelia & Chiari Network on Sunday.

What is considered small syrinx 25 Replies

I have syrinx from t6-t10 and is 3mm in width (prob had all my life but found on mri in 2005)I have been told by neurologist and gp that is of no concern as has not changed and is not cause of my pain, dizziness, tachycardia etc. I was under…Continue

Started by Lisa (SM). Last reply by Lisa (SM) on Friday.

Syrinx and Chiari MRI - Medical Marvel 7 Replies

I am actually posting this on behalf of my wife. In the past few weeks she was diagnosed with Chiari 1 with Syringomyelia. Her Syrinx is the largest any of the Dr's and Radiologist have ever seen. They have said she is a walking medical marvel in…Continue

Tags: Syrinx

Started by PrinceK. Last reply by PrinceK on Friday.

Top Members 

1 PrinceK


Simpsonville, SC, United States

2 Bonnie Leon

Bonnie Leon

Glide, OR, United States

3 anne marie (Network Admin.)

anne marie (Network Admin.)

Toronto, Ontario, Canada

4 Petra


Weibern, Rhineland-Pfalz, Germany

5 Andrea Russell (SM)

Andrea Russell (SM)

Orlando, FL, United States

Jamie McDonald Fundraising Adventurer

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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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