Community Support for All Rare Diseases, Conditions or Disorders like Syringomyelia, Chiari, EDS, Epilepsy & more. #rarediseasematter

A place to Share, Learn & Support!

Subscriber & Help Build Our Community!

Subscribe to our Network, and help build our community support. Membership to our Network is always FREE, but the cost to maintain the network is not, which is why we are asking members to become Subscribers for the small contribution of $20 / year. You are helping our team provide educational information, helpful resources, and provide support for those affected by Syringomyelia, Chiari Malformation & other Rare Diseases or Disorders around the world, Subscription Includes:

  • Wristbands (2)
  • Brochure
  • Thank you letter
  • 1 Year Subscription
  • Past Support Group Meeting Recording (Access) 
  • Subscriber Banner on Profile Picture
  • Network Membership Access
  • Network Chat Room Access
  • Online Support Group Meeting Access

Its the responsibility of our subscribers to take the initiatives to be apart of the Chat Room or Online Support Group Meetings. Thank you for your support!

Awareness Wristbands

Help support our Network & its innitiatives by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands: Blue and Purple. Order Now!


Syringomyelia & Chiari Wristband


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

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Rogers TV: Talk Durham Interviews

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)

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August 11, 2016

Rare Disease Support Group Meeting

Topic: coming soon
Presenter: coming soon


1) Ajax Public Library: 55 Harwood Avenue South Ajax ON L1S 2H8 Canada


Latest Activity

sean alexander maloney joined Christine Webb (SM) USA REP's group

Information for the Newly Diagnosed

This is where blogs specifically regarding things about SM are listed for those who are looking for…See More
1 hour ago
sean alexander maloney left a comment for Lori Hart (SM) angel/Canada Rep
"Thank you Lori for your kind welcome and sound counsel. I will do my best to heed your advice as I…"
3 hours ago

Subscriber (SM/CM)
Carion Fenn Network commented on Carion Fenn Network's blog post Your feedback is NEEDED
"Thank you guys, we want to keep everything consistent with our branding.  Option 1: a) Health…"
6 hours ago

Subscriber (SM)
Jill McLaren left a comment for Jennifer Allen
"Happy Birthday Jennifer from all of us here at Carion Fenn SM/CM Social Network!  Best wishes,…"
11 hours ago


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 Malformation (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. 

Rare Diseases/ Disorders: There are over 7000 known rare diseases/disorders. 1 in 12 Canadians will be affected by a rare disease. Rare in the USA, when it affects fewer than 200,000 Americans at any given time. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. 50% of rare diseases touch children.

Blog Posts

would anyone be interested in easy meal Ideas ?

Posted by Lori Hart (SM) angel/Canada Rep on July 29, 2016 at 3:08pm 3 Comments

Some of our members have asked if we could perhaps do something in the way of easy to prepare

meals etc. We all experience a challenge with standing for long periods or hand weakness. If this is of interest to anyone I want to hear from…


Beginning signs

Posted by Guy Tortorici on July 24, 2016 at 11:08pm 2 Comments

Hi all.  I have a question I am hoping someone can help me with.  My son, 22, college student, was diagnosed with syringomyelia last year.  It started out with tingling in his pinky finger.  We initially thought it was ulnar nerve related because…


Can pain cause a fever

Posted by Julie Moskal on July 21, 2016 at 11:25pm 6 Comments

I have felt like I have the flu for the past 10 days. Doctor told me I have sinus infection. I have had moderate to severe pain in my upper body from across the middle of my back to my arms, my neck is throbbing along with my jaws and head. Along… Continue

FEEDBACK NEEDED: NEW Awareness Wristbands

Posted by Carion Fenn Network on July 21, 2016 at 12:41pm 4 Comments

We need to design new wristbands for the Rare Disease Expo not sure how to do the wristbands. Need your suggestions. 

Front: Rare Diseases




Feels Like my back is broken 6 Replies

I am in pain all the time, I have a syrinx of last know of 6cm by 3mm on my spinal cord and a synovial cyst on my tail bone 1"1/2 and also bone deterioration through out my spine from top to bottom. In the last year or more I have been having lower…Continue

Started by Sherry Bourque SM. Last reply by Lori Hart (SM) angel/Canada Rep Jul 21.

Newly diagnosed and needing answers/support 3 Replies

Hi everyone,Let me tell you a bit about myself. I'm Andrea, I'm a 24 year old mother to a 3 year old boy and am marrying my fiance next weekend.I was in a jetski accident 2 years ago and initially had a torn muscle in my knee bit was otherwise okay.…Continue

Started by Andrea Karpinski. Last reply by Shaun Kelly Jul 14.

Burning hands and feet 2 Replies

Hi,I have begun to have burning in my feet and hands. It's pretty intense. Do I speak to my family doc, Neurologist, or do I see a pain specialist??Thanks for any help. This is new and painful.Continue

Started by Ed Van. Last reply by Lori Hart (SM) angel/Canada Rep Jul 14.

Recently diagnosed 1 Reply

I found out a month ago that I have a syringohydromyelia. I am still waiting to see a neuro surgeon but everything I have read has scared me a lot.

Started by Lindsay. Last reply by Lori Hart (SM) angel/Canada Rep Jul 11.


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