Our virtual Community is a place to share, learn & support those affected with SM & CM, Rare Conditions & medical professionals.

WELCOME!

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.

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.

Upcoming Events:

April 14, 2015 6:30PM: 

Volunteer Recognition Award Ceremony
Our Foundation Carion Fenn will receive the Ajax Civic Award from Mayor Parish, Town of Ajax

July 17, 2015 12am-11:59am
Syringomyelia & Chiari Day Facebook 
Event 

July 17, 2015 Flag Raising 

City of Pickering: Our Syringomyelia & Chiari Flag will be raised for the day. 


May 11, 2015 7pm

Town of Ajax Council Meeting
Town of Ajax: Council Chambers 
(Syringomyelia & Chiari Malformation Proclamation Presentation)
Mayor Steve Parish will present the Proclamation to Carion Fenn 

September 1, 2015: 11AM:

Town of Ajax (Flag Raising Event)
Syringomyelia & Chiari Malformation Flag Raising with Mayor Parish. Our Flag will be up at Town Hall for 1 weeks following the Flag Raising with Mayor Parish. 

September 7 – 13, 2015 Flag Raising

City of Pickering: Our Flag will be raised for the Day. 

Subscribe & Help Us Help Others.

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, A thank you letter for your support, Banner on personal SM/CM page that shows you as a subscription member, Network Membership (Access), Network Chat Room (Access), Online Support Group (Access)

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

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. 

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

kizzi faulkner is now a member of Social Network ~ Syringomyelia & Chiari Network
8 hours ago

Member (SM)
john stanley replied to Syringomyelia & Chiari Network's discussion Canada- Alberta (doctors' info & review) in the group Doctor's Corner
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13 hours ago

Member (SM)
john stanley joined Syringomyelia & Chiari Network's group
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Doctor's Corner

The Doctor’s Corner is a place for us to share our personal experiences with our doctors, list your…See More
13 hours ago
Profile IconBeeba and Brittany joined Syringomyelia & Chiari Network's group
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Rare Conditions Network

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

What is Syringomyelia & Chiari Malformation!

Syringomyelia (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. 

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. 

Statistics:

 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. 

Blog Posts

Dates Posted for the Annual 2015 SM/CM Conference!!

Posted by Christine Webb (SM) USA REP on March 31, 2015 at 7:00pm 1 Comment

For anyone who has not had the chance to attend a conference where patients are able to meet, talk to, and learn from those on the cutting edge of research and treatment of SM and CM - then you should try to get to one of these! ASAP…

Continue

A Mervelous Journey Episode 2.11

Posted by Mervin Webb on March 30, 2015 at 9:27pm 0 Comments

All good things must come to an end. This is the final episode of the 2015 Crossfit Open Season and once again, The Crossfit director has tested the limits as the final event includes Thrusters and Calorie Rows. Thrusters are no fun. Come see me…

Continue

Award #4 Carion Fenn Selected for Town of Ajax: Ajax Civic Award 2014

Posted by Syringomyelia & Chiari Network on March 26, 2015 at 4:12pm 4 Comments

Award #4: Ajax Civic Award, just got a letter from Mayor Steve Parish, Town of Ajax. I was selected for one of the Towns most prestigious Awards. The Mayor will present me with the Award at the Volunteer Recognition Award Ceremony April 14, 2015.…

Continue

Flare ups with cold and flu

Posted by Corrine on March 25, 2015 at 3:00pm 3 Comments

Hi I am new here ao I am unsure how this works. I was wondering why i get bad flare ups when I get a cold or flu, does this happen with everyone? Sorry I am still trying to figure out information on Syringomyelia.

Forum

Clinic in Barcelona claims to have a cure!!! 12 Replies

This is a bit long but here it goes,A little background on me: In my professional life, I was a Quality Engineer, it's in my blood. I started at the bottom and worked my way up, the old fashion way. It's also my personality type that drove me to the…Continue

Started by SM Debiann. Last reply by mandy orpen sm 17 hours ago.

Getting ready for surgery?

My surgical routine - and yes sadly I have one.1. Check into stores grocery delivery services. Many like giant(peapod), and Safeway have them. It is a great way to feel you are still contributing yet it is all done with just a few clicks and takes…Continue

Started by Beeba 21 hours ago.

Taking a vacation while on ODSP 6 Replies

Has anyone gone on vacation while they were on ODSP? Like for example a couple of weeks to the US. And what happens if you need to go to the hospital? I can't get my caseworker to call me back. :( Thanks.Continue

Started by Robin (SM) (ACM). Last reply by Abby on Friday.

Vertigo? 3 Replies

Does anyone here suffer from vertigo. I just started having it 2 days ago and I dont know if its related to theSM.;Continue

Started by Lydia Leeson SM. Last reply by Rebecca on Wednesday.

Jamie McDonald Fundraising Adventurer

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Videos

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Carion Fenn Foundation

Carion Fenn Foundation coming soon, 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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