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

Patti Dawson Scholarship Award

The Spinal Cord Injury Ontario & University Health Network (UHN) have selected our Founder, Carion Fenn, for The Patti Dawson Scholarship Award. 

The Award will be presented to Carion at the 

6th National Spinal Cord Injury Conference

on October 4, 2014 12PM 

Town of Ajax Accessible Award

Town of Ajax have 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

September 8, 2014 10:15am 

Syringomyelia (SM) & Chiari Malformation (CM) 
EVENT: SM & CM Flag Raising Ceremony
Town of Ajax – Town Hall
65 Harwood Avenue
Ajax, ON L1S 2H9 Canada 
www.ajax.ca

Town of Ajax, Mayor Steve Parish, will host a Flag Raising Ceremony for Our Syringomyelia & Chiari Malformation Flag. Our first flag will be raised in honour of Ms. Patti Dawson. Click Here to RSVP.

Our flag will be up from September 8 -14, 2014. 

View Video: https://www.youtube.com/watch?v=lArXjkvUjGg&feature=youtu.be

September 15 - 21, 2014

City of Pickering will raise our flag in honour of Syringomyelia & Chiari Malformation Month (September) 

One The Esplanade

Pickering, Ontario, Canada L1V 6K7

www.pickering.ca

September 22, 2014

City of Markham will raise our flag for the day in honour of our Syringomyelia & Chiari Malformation Month. 

Markham Civic Centre
101 Town Centre Boulevard,
Markham, Ontario, L3R 9W3

2014 Wheelchair Relay Challenge
Sunday September 21, 2014
Monarch Park Stadium [Click to view map]


Read Peter Athanasopoulos' bio at:
http://support.sciontario.org/goto/peter_a  and help us help all those with spinal cord injuries in Canada!!

SM & CM Awareness Products

Syringomyelia & Chiari Malformation Awareness Wristbands <click here> to order yours now and help support our causes. 

Syringomyelia & Chiari Malformation Awareness "Together We Are Stronger" T-Shirt. 

<click here> to order. 

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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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 at the click of a button in seconds - so please join us by clicking on the network button above.

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

_________________________________

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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    Blog Posts

    What do I do?

    Posted by Andrew Timothy Jucutan on September 27, 2014 at 4:09pm 1 Comment

    So I have this Syringohydromaelia thing and no one around me cares to research it themselves. They all seem to think that because I've been blessed I guess with a body that "Looks"in shape, so they all assume I'm alright. I hate showing my pain and… Continue

    I got my CPP disability,.

    Posted by Sheila DiFonzo on September 18, 2014 at 3:30pm 2 Comments

    I just received my confirmation letter. I have been approved for CPP disability.I somehow thought that I would not qualify don' t ask why.

    I suppose this means I really am disabled.

    Other that money and a tax break does this qualify me for… Continue

    charcot neuropathy

    Posted by Kelly Kenney on September 10, 2014 at 2:51pm 3 Comments

    I have a syrinx in my thoracic & lumbar spine.  I have developed a varus alignment & charcot joints which are crippling my feet and legs.  Wondered if anyone else had this problem & what their Dr's were doing to help?

    Full Moon, Weather Changes

    Posted by Mary Ann Ferrara SM on September 9, 2014 at 9:35pm 1 Comment

    Anyone else feeling the horrible effects of this last Summer Full moon? I know my pressure issues have been unbelievable in Atlanta, Georgia and fellow Sm'ers' are suffering as well! :-(

    Jamie McDonald Fundraising Adventurer

    A REAL lasting impact, for future fundraising

    Every fundraiser dreams of creating a lasting impact. F […]

    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

    On Line Support Group Meeting

    I am so curious to know how the on line support group meeting was on Saturday. Please tell us all about it. Unfortunately I could not participate because I do not have the proper equipment.

    Started by Mary Rudy (SM) Sep 17.

    "ice Bucket Challenge" 2 Replies

    OMG we must all put on our thinking caps and come up with a simple and creative idea like ALS did, "The Ice Bucket Challenge". This has spread world wide so quickly and we could enormously benefit from getting SM and CM exposure. ALS has become a…Continue

    Started by Mary Rudy (SM). Last reply by Mary Rudy (SM) Aug 28.

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