Welcome to our Unique Virtual Community: a place to share, learn & Support each other because Together We Are Stronger (R). JOIN US!

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.

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! 

Awards:

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. 

Next Live Online Support Group Meeting July 25 & 27, 2015, click on our Events page for details.

Latest Activity


Member (SM)
Christine Webb (SM) USA REP commented on Ashley Matos's blog post Its been a while
"Since you are in NY I would look into going to TCI! That is The Chiari Institute in case you…"
13 hours ago

Member (SM)
Christine Webb (SM) USA REP replied to Becky Smith's discussion nowhere to turn
"Have you checked out the doctors corner to see who is listed in your area? There is a list on…"
13 hours ago

Member (SM)
Christine Webb (SM) USA REP replied to Shaye's discussion My story so far
"MRV and MRA examinations are similar to an MRI, but they focus exclusively on the…"
13 hours ago

Member (SM)
Christine Webb (SM) USA REP commented on Ranae Hatch (SM)(CM)'s blog post Worst day ever!
"Although I don't have CM - just SM, I can honestly say that there is more hope that a cure - a…"
14 hours ago

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

Worst day ever!

Posted by Ranae Hatch (SM)(CM) on August 28, 2015 at 12:00am 1 Comment

I have to say that I have been through a lot since my diagnosis and subsequent surgery. I spent a month in hospital, followed by a long recuperation and I figured the worst was behind me. So I thought. Then I noticed some familiar symptoms in my…

Continue

Decompression surgery went well

Posted by Jamie Engerdahl on August 26, 2015 at 8:30pm 2 Comments

Wow what a day our little family  (husband/daughter) had today. My son 18yrs old just had surgery today to take out a piece of his skull and vertebrae. The doc graphed part of his leg to join the two pieces together to allow fluid to the brain…

Continue

Syringomyelia and the Cycle of Strife

Posted by Michael Doc Davis on August 21, 2015 at 11:50pm 0 Comments

Syringomyelia and the Cycle of Strife. We strongly disagree on what my body should do and how it should feel! --…

Continue

Syringomyelia – He Said, She Said

Posted by Michael Doc Davis on August 15, 2015 at 11:14pm 0 Comments

With Syringomyelia, there are two sides to every story.  The side of the person suffering from the disease and the person suffering that feels like they are unable to help. -- …

Continue

Forum

nowhere to turn 1 Reply

I have been searching for a doctor in Cleveland that I can get to. I am getting worse and know it is getting worse. I am tired of gonig to the ER and them looking at me like I want to go there instead of the doctor. The neurosurgeon who did my neck…Continue

Started by Becky Smith. Last reply by Christine Webb (SM) USA REP 13 hours ago.

My story so far 1 Reply

My name is Shaye, about 5 weeks ago i woke up and noticed that my pinky finger on my left hand was numb but tingly which is a contradiction in its self but thats how i describe it. after a few weeks i went to the dr who sent me for blood tests,…Continue

Started by Shaye. Last reply by Christine Webb (SM) USA REP 13 hours ago.

How to convince doctor do further test? 3 Replies

I'm new here. I am not diagnosed with SM, but suffering headache, shoulder and back pain for over 10 years, and muscle and eye spasm,  and vertigo for years, every doctor visit was told to exercise and watch the progress. Only once my doctor did…Continue

Started by June Wang. Last reply by Betty J Haley Aug 18.

Collapsed sryinx Questions??? Anyone?

,,has anyone had a CSF leak that caused their sryinx to collapse? I am in process of getting referral to NS now, but been real sick past 2 weeks, my sryinx was stable before the lumbar puncture July 2 nd, had a few CSF leaks and 2 blood patches done…Continue

Started by Betty J Haley Aug 18.

Top Discussions 

1 Decompression surgery

Decompression surgery

Posted by Jamie Engerdahl on August 26, 2015

2 SM Surgery and Recovery

SM Surgery and Recovery

Posted by Haley Steinbach on August 21, 2015

3 New surgery date

New surgery date

Posted by Lauren Cavanaugh on August 20, 2015

Carion Fenn Twitter

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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:

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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DISCLAIMER

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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