Welcome to our Unique Virtual Community: a place to share, learn & Support each other because Together We Are Stronger (R). JOIN US!

Our Mission:

To share, learn and support those affected by Syringomyelia (SM) and Chiari Malformation (CM), and their treating medical team while educating the public in hope of discovering a cure.

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:

  • 2 Syringomyelia or Chiari Malformation Wristbands.
  • 2 Syringomyelia or Chiari Malformation brochures.
  • Thank you letter for your support.  
  • Banner on personal SM/CM page that shows you as a subscription member
  • Network Membership (Access)
  • Access to missed Online Support Group Meetings.
  • Direct invite to our Online Support Group & more.

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

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.

SM & CM Awareness Products

Wristbands <Click Here> 

T-Shirt: <Click Here> 

Cards: <Click Here>

Order your products today and help support our causes. 

Google Ads...

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. 

Google Ads......

Badge

Loading…

What is Syringomyelia & Chiari Malformation?

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. 

Latest Activity


Member (SM)
paula arrigonie commented on Syringomyelia & Chiari Network's blog post Volunteers Needed for our Syringomyelia & Chiari Network & Carion Fenn Foundation
"I would so love to be a volunteer, but its quite imposible for me as i live in the UK !!"
2 hours ago

Member (SM)
Kris M (SM) commented on Syringomyelia & Chiari Network's blog post Volunteers Needed for our Syringomyelia & Chiari Network & Carion Fenn Foundation
"I love to Volunteer what does it entail? I was a member of another group that started recently but…"
4 hours ago

Member (SM/CM)
Bryn Swan updated their profile
9 hours ago

Subscriber (SM)
Jill McLaren replied to Becky Smith's discussion swallowing
"Hi Becky,  I really think you should go to the doctor's or walk in clinic or ER, whatever…"
10 hours ago

New Article: News Advertisers

Volunteering has made Fenn top Ajax citizen
Article by Keith Gilligan, News Advertisers. Our Founder Carion Fenn won the Town of Ajax highest honour: Ajax Civic Award. 

 

Please subscribe to our Network to help build our community, increase awareness in hopes of finding a cure. 

Help keep us going with our 2015 Together We Are Stronger Campaign. 

Blog Posts

Volunteers Needed for our Syringomyelia & Chiari Network & Carion Fenn Foundation

Posted by Syringomyelia & Chiari Network on July 5, 2015 at 5:27pm 2 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 want…

Continue

New to everything

Posted by Lynda Williams on June 21, 2015 at 6:00pm 5 Comments

Hi, I  am Lynda  47 I just found out last week that I had a syrnix.  That was by accident.  I went to a orthopedic and had a MRI for a lumbar herniated disc. When I went to the appointment he focused on the herniated disc and that was that.  A…

Continue

appointment with neurologist !!

Posted by paula arrigonie on June 18, 2015 at 7:39pm 5 Comments

Just got back from lovely holiday in cyprus, 4am, had and appointment with mr rutherford, my neurologist at 12.30 pm. He asked how i was doing, i told him i wasnt doing too well, that i had been experiencing a lot of heaviness in my legs, and arms,… Continue

Strange sensation

Posted by Lisa (SM) on June 10, 2015 at 9:36am 2 Comments

So here's something new for me instead of the random areas of thinking/tickling feeling under skin I have been having the sensation constantly for over week on right side of back and it has moved to arm scalp and leg only in one side and having more… Continue

Forum

swallowing 1 Reply

I have an issue with my swallowing and by ny throat i feel something there. The swallowing seems to be in my chest where my syrinx is along with a swollen disc i am assuming by where it is difficult. the feeling in my neck is like something is…Continue

Started by Becky Smith. Last reply by Jill McLaren 10 hours ago.

Looking for a doctor for referral. 12 Replies

My daughter has SM. She saw a neurosurgeon a couple of weeks ago, who acted as if he "knew it all" and actually said that all the sites and info given out on chiari and syringomyelia sites were wrong. Seems closed minded to me.He did order a lot of…Continue

Tags: Neurosurgeon, Referral, doctor, SM, for

Started by Bonnie Leon. Last reply by Karletha Gilliam on Wednesday.

Learning how to deal with my new life?

first,let me say hello to everyone,I hope you all stay strong,this is how you can help me,I must say I guess the cat got my tongue at this point,it's like these doctors need to get it together,it's like by the time I get this fixed,it will be to…Continue

Started by David hawthorne Jun 29.

Learning how to deal with my new life?

first,let me say hello to everyone,I hope you all stay strong,this is how you can help me,I must say I guess the cat got my tongue at this point,it's like these doctors need to get it together,it's like by the time I get this fixed,it will be to…Continue

Started by David hawthorne Jun 29.

Top Members 

1 David hawthorne

David hawthorne

Philadelphia, PA, United States

2 anne marie (Network Admin.)

anne marie (Network Admin.)

Toronto, Ontario, Canada

3 Bonnie Leon

Bonnie Leon

Glide, OR, United States

4  Karletha Gilliam

Karletha Gilliam

Ankeny, IA, United States

Jamie McDonald Fundraising Adventurer

Loading… Loading feed

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

_________________________________

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

 
 
 

© 2015   Created by Syringomyelia & Chiari Network.

Badges  |  Report an Issue  |  Terms of Service