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), Chiari Malformation (CM ), and Rare Disease 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
Colour

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.

Events

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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)

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What is Syringomyelia, Chiari Malformation, and Rare Disease?

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. 

Rare Disease: 1 in 12 Canadians have a rare disease, when a rare disease affect fewer than 200,000 Americans at any given time, the diseease is defined as rare in the USA. In Europe when a diseease affect fewer than 1 in 2000 person, the disease is defined as rare.

Latest Activity

Veronica Harvey replied to Veronica Harvey's discussion Is it worth it?
"Hi Lori, Thanks for your reply! Way before I was referred to the neurosurgeon, I was referred to a…"
4 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep replied to Sarah's discussion My doctor wont listen to me!
"Hi Sarah I am sorry to hear that you are having such a difficult time dealing with your…"
14 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep replied to Teresa's discussion Does anyone have Multiple Sclerosis or have they ever been tested for it?
"Hi Teresa I have been tested for MS on and off for the first 4 years of my symptoms rearing their…"
14 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Sheila Di Fonzo
"Happy Birthday Sheila !!!!! From all of us !!!! Best wishes Lori xo"
14 hours ago

Blog Posts

Syrinx too small?

Posted by Bonnie Leon on February 9, 2016 at 2:35pm 1 Comment

A frustrating doctor's appointment for my daughter today. She has two syrinx - one in her cervical spine and one in her thoracic spine She had a doctor's appointment today and was told that they are both small and would not cause her symptoms,…

Continue

Volunteers Needed !

Posted by Lori Hart (SM) angel/Canada Rep on February 9, 2016 at 1:00pm 0 Comments

Hello Members and Subscribers !

We are currently looking for Volunteers who are interested…

Continue

Random question

Posted by Ashley Matos on February 7, 2016 at 3:04am 6 Comments

Anyone with syrinx find it hard to date? I mean.... does it leave you afraid to be with someone cause your condition is rare and hard for people to understand what you are feeling? Doesn't it in the long run make you worry it may put a strain on… Continue

Moderators Needed

Posted by Lori Hart (SM) angel/Canada Rep on February 6, 2016 at 9:00pm 0 Comments

Hello Members and Subscribers.....

If you are passionate about helping to provide support for those affected with Syringomyelia & Chiari Malformation and want to do more to help support our community and increase awareness. We…

Continue

Forum

Is it worth it? 2 Replies

Hi everyone,I was diagnosed with Chiari last spring, and a follow-up MRI of the spine in September showed a syrinx running almost the full length of my spine, as well as a couple of herniated disks (one cervical, one thoracic). I was also diagnosed…Continue

Started by Veronica Harvey. Last reply by Veronica Harvey 4 hours ago.

My doctor wont listen to me! 4 Replies

I'm tired of doctors telling me just because I have a skinny yet long syrinx starting at about c5 going down maybe to T1 that it doesn't cause my pain. Why else would I have constant neck n back pain or shooting pain down my arms and legs not to…Continue

Started by Sarah. Last reply by Lori Hart (SM) angel/Canada Rep 14 hours ago.

Does anyone have Multiple Sclerosis or have they ever been tested for it? 2 Replies

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. Last reply by Lori Hart (SM) angel/Canada Rep 14 hours ago.

I spoke to my neuro doctor 1 Reply

Goodmorning everybody,if you remember my post from afew days back, I finallyspoke to my neuro doctor,and on the 19th I see him,and he is leaving it up tome if I want to see the neuro surgeon,or if I want to ride this onout. I am thinking i am 'd'if…Continue

Started by Betty Corey. Last reply by Lori Hart (SM) angel/Canada Rep Feb 7.

Top Discussions 

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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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