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Syringomyelia & Chiari Wristband
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Become a Syringomyelia & Chiari Network Subscriber and help support our causes ($10/Year):

Subscription (optional). This is not required to be a member of our social network, but rather help us to keep our support systems free. Thanks for your continued support.

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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Snapd Clarington Newspaper

Snapd Clarington

(December 2013 Newspaper, page 16)

We have an article published in the Snapd Clarington Newspaper December issues thanks to Ms. Deb Simic, Publishing Editor. Our Meet & Greet II was also listed on Snap Clarington website.

Charity Village
Awareness Day Calendar

Syringomyelia & Chiari Malformation
July 17 (Day) & September (Month) 

We were able to get Syringomyelia & Chiari Malformation dates listed on the Awareness Calendar for Charity Village. We appreciate their support in listing our conditions awareness dates. 

Together We Are Stronger Campaign

"Together We Are Stronger" Campaign.

A campaign to promote our Syringomyelia & Chiari Malformation Day (July 17) & Month (September). This campaign will highlight how we work together in support of each other to increase awareness. Over the years, we will be doing different projects to increase awareness and support our members.

To check out our News Room <click here>

July 17 we are asking our supporters, members, friends, and family to wear the SM/CM wristbands to show support for our causes and inspire people to tell others about our conditions. We are also asking our supporters, members, friends, and family to change their Facebook profile picture to show the picture of our "Together We Are Stronger Campaign" Poster. Help us increase Awareness because together we are stronger. 

Proclamation Received

City Of Oshawa
Mayor 
Syringmyelia & Chiari Malformation Day July 17, 2014 & Month September 2014
Syringomyelia & Chiari Malformation Day Sept/13

Mayor Rob Burton - Town of Oakville, ON CA
Chiari Malformation Month September 2013

Syringomyelia & Chiari Malformation dates July 17 andSeptember formally recognized by the Town of AJAX, On Canada Mayor Steve Parish

We are pleased to announce that the Mayor Steve Parish of the Town of Ajax in Ontario Canada, presented to Carion Fenn, creator and founder of the Syringomyelia & Chiari Network, a certificate of proclamation recognizing July 17 and the month of September as Syringomyelia and Chiari Malformation awareness dates live on Rogers TV. 

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Petition to the Government of Canada and Members of Parliament: 

We petitioned 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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Anoja Perera commented on Syringomyelia & Chiari Network's blog post Local Support Group Meetings: Your suggestions and ideas required
"I can think of couple of things... 1. Having someone to talk to. Especially when someone…"
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Syringomyelia & Chiari Network's blog post was featured

Local Support Group Meetings: Your suggestions and ideas required

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Syringomyelia & Chiari Network posted a blog post

Local Support Group Meetings: Your suggestions and ideas required

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Jill McLaren (SM) commented on Syringomyelia & Chiari Network's group British Columbia Network
"This is great wealth of resources Stephanie. Thank-you for posting this and I will certainly take a…"
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"Have a Wonderful Birthday Barbara from all of us here!   Many Best wishes, Jill xo"
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    Blog Posts

    Local Support Group Meetings: Your suggestions and ideas required

    Posted by Syringomyelia & Chiari Network on July 24, 2014 at 12:15pm 1 Comment

    Support Group Meetings (Syringomyelia & Chiari Malformation) :

    We would like to know what you want from a support group meeting? We want to ensure that we have support group meetings available in as much local areas as…

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    Our GoFundMe Page is live, please donate it you can.

    Posted by Syringomyelia & Chiari Network on July 10, 2014 at 10:47am 0 Comments

    Members;

    Below please find the text from our GoFundMe page, for donations please click on the link below:…

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    City of Oshawa Proclaim July 17, 2014 Syringomyelia & Chiari Malformation Day

    Posted by Syringomyelia & Chiari Network on July 8, 2014 at 8:30am 3 Comments

    July 12, 2014 (update)

    RT: #Syringomyelia & #Chiarimalformation Day Countdown #5: City of Oshawa #Proclaim July 17, 2014 as SM &…

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    Jamie McDonald Fundraising Adventurer

    Taking part in the Fishermans Friend – Strongman Run

    Being selected to tackle the Fisherman’s Friend, […]

    BBC documentary: Canada, Coast-to-Coast

    Including never-before-seen footage, the BBC produced t […]

    Forum

    SM Friends and more... 2 Replies

    ~Had great conversations this week with 3 awesome members. Its amazing the wealth of information and caring that was shared. Thank you, Louis SM for keeping it going and to N Smith SM and Valerie Butt SM for providing laughter, kinship, and higher…Continue

    Started by Mary Ann Ferrara SM. Last reply by Jill McLaren (SM) Jul 9.

    Unbearable Searing 15 Replies

    Anyone else have unbearable searing pain at the level of your syrnix? I find mine is aggravated by being upright and doing any activity with my hands. Even if I'm upright and and active for a few minutes.

    Started by Ginger Resler SM. Last reply by Jerri Lynne Hamby Jul 6.

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