Our virtual Community is a place to share, learn & support patients with SM & CM, loved ones & the medical professionals that treat them.

Syringomyelia & Chiari Products



Syringomyelia & Chiari Wristband
Colour

To purchase other Syringomyelia & Chiari

Malformation products click on our Estore tab.

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)

Network Subscription

Become a Syringomyelia & Chiari Network Subscriber and help support our causes ($5/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.

 

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. 

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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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
September 30, 2013
Syringomyelia & Chiari Malformation Day


Town of Oakville, ON Canada
September 2013
Chiari Malformation Month

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. 

_________________________________________

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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Latest Activity


Member (SM)
Ryan N is now a member of Carion Fenn Syringomyelia & Chiari Network
1 hour ago

Member (SM)
Beth (SM) commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"Sarah, Thank you so much for sharing your story....my heart goes out to you and thank you for…"
1 hour ago

Member (SM)
Christine Webb (SM) USA REP commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"I think you mean idiopathic not insidious"
2 hours ago

Member (SM)
Mary Ann Ferrara SM commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"Christine and Beth, There are actually many articles about the "insidious" nature of…"
2 hours ago

Member (SM)
Christine Webb (SM) USA REP commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"Where did the JH doc put the shunt?? It sounds as if he drained it to the lungs! I am not sure why…"
5 hours ago

Member (SM)
Christine Webb (SM) USA REP replied to Mary Ann Ferrara SM's discussion Natural Relief & Hope in the group Georgia Network
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Member (SM)
Beth (SM) and Mary Ann Ferrara SM are now friends
11 hours ago

Member (SM)
Sarah Wesco (SM) commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"Wow Beth I'm so sry you've had to go thru all this. I know how hard SM is and how it…"
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Member (SM)
Mary Ann Ferrara SM commented on Mary Ann Ferrara SM's blog post Tremors, tremors, tremors...
"Thank you Allie and Stephanie, I have had trouble with some medications and as a single mother it…"
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Member (SM)
Mary Ann Ferrara SM commented on Beth (SM)'s blog post My rare SM journey....hope to help someone else.......or find someone like me....
"Hi Beth, I live in Georgia almost 5 years now and began our Georgia Network for Carion Fenn…"
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    Blog Posts

    My rare SM journey....hope to help someone else.......or find someone like me....

    Posted by Beth (SM) on April 23, 2014 at 10:11am 8 Comments

    Hello Everyone!

    My name is Beth and I have SM.....a rare form apparently.  My journey started in 2010 when I started developing right neck and right shoulder pain.  When I complained since I worked as a trauma nurse my aches and…

    Continue

    Clonus

    Posted by Allie Powter ( SM ) on April 23, 2014 at 8:01am 0 Comments

    Hello everyone,
    I was just at a movement disorder clinic today and they diagnosed me with clonus. Has anyone else been diagnosed with this? Does anyone know what it is and what it does?

    Tremors, tremors, tremors...

    Posted by Mary Ann Ferrara SM on April 21, 2014 at 6:11pm 3 Comments

    Does anyone else suffer from painful, non-stop tremors??? What have you done for relief? Have doctors given you advise/support? I only have Syringomyelia, but feel many Chiari symptoms as well. Thanks for anything you have to offer and please…

    Continue

    Jamie McDonald Fundraising Adventurer

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    Forum

    Had anyone tried Reiki Massage? 3 Replies

    Hi, I went to the nail salon last week and did a spa pedicure in one of the massage chairs and didn't think of it being like a regular massage, which my NS told me NOT to have, and afterwards it was like my arms and legs wouldn't really work and…Continue

    Started by Amber McDonald (SM). Last reply by Sarah Lutze (SM) Apr 8.

    SM Friends and more...

    ~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 Apr 5.

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