Support Community for those affected by Syringomyelia, Chiari Malformation & Rare Diseases/ Disorders Including EDS, Autism, Epilepsy & more

A place to Share, Learn & Support!

Rare Disease Health & Wellness Expo


Subscribe & 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!

Get Your Wristbands NOW

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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Next Support Group Meeting February 9, 2017 6:30PM - 8:30PM Eastern

Canabis For Pain

Host: Carion Fenn Foundation in partnership with Ajax Public Library

Presenter: Matthew Burns, Pain Specialist

Register and attend our monthly support group meeting and enter to win a FREE Treatment Session/ Consultation from the Presentation Expert. at

How to access support: 

1) Location - Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.

2) Online - Skype:

3) Phone:  +1 (647) 749-7011  Conference ID: 9833479

Find a local number:  

Latest Activity

Sylva Cassells joined Carion Fenn Network's group

Durham Network

Durham NetworkWelcome to Durham Network, A Network Group in Durham, Ontario Canada. For all those…See More
Sylva Cassells posted a discussion

Good info sites?

I was diagnosed with a syrinx at C4-C6 with no compression. My doctor didn't seem to know much…See More
Sylva Cassells is now a member of Carion Fenn Network (Syringomyelia, Chiari & Rare Disease)

Subscriber (SM/CM)
Carion Fenn Network posted an album

Proclamation (Town of Ajax) 2017

The Town of Ajax and Mayor Parish proclaimed February 28 2017 as Rare Disease Day in the Town of Ajax as requested by Carion Fenn Foundation. For more info visit Thank you to out team for there's hard word and dedication in…
Feb 17


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

Our Angel Lori Hart loss her dad, please join me in sending her our Love, Support and Prayers

Posted by Carion Fenn Network on December 12, 2016 at 5:14am 10 Comments

Hello Members,

Lori Hart has been our rock in supporting everyone, now she need our support. I'm sure you all know who she is, always welcoming, saying hello and wishing you all a happy birthday. Now she need our support. Recently…


Please send Libby Walden your wishes...

Posted by Lori Hart (SM) Canadian Rep on November 8, 2016 at 1:49am 5 Comments

Libby Walden has brought it to our attention the her beloved husband Jimmy has lost his battle with Syringomyelia on the 23rd of  October.

please send her and her family your prayers and condolences…


Volunteers Needed

Posted by Lori Hart (SM) Canadian Rep on November 4, 2016 at 5:42pm 0 Comments

Are you good at engaging in conversation? Do you want to help people and let them know that they aren't alone on this journey?


If your interested in volunteering please leave me a comment below, I look forward…



Posted by Carion Fenn Network on October 7, 2016 at 5:28pm 9 Comments

Post received from our Members Ronald Grab. Please post you comment on this blog. 

I am new to this and not sure if I am posting in the…



Good info sites?

I was diagnosed with a syrinx at C4-C6 with no compression. My doctor didn't seem to know much about it except that it is like my Achilles Heel and to avoid getting hit or pressure to the back of my neck/head.I used to go to the chiropractor…Continue

Started by Sylva Cassells on Sunday.

Looking for a syringomyelia specialists in Edmonton

Please advise

Started by Catherine Jan 26.

Chiari headaches

My chiari headaches are worse,use to when I had them, theywould go from the back of my headaround to my eyes at times, nowit feels like my head is splitting,or like someone is yankingout my hair, and it runsdown my neck into my shoulderseven.…Continue

Started by Betty Corey Jan 10.

frustration 9 Replies

What do you guys do when you are frustrated? I have tried everything to keep it down. i do not need the stress. I am being told my syrinx as small as it is, got smaller. I have bladder issues, have trouble pooping (sorry tmi), my lower half loses…Continue

Started by Becky Smith. Last reply by Becky Smith Jan 6.

Top Discussions 

1 Good info sites?

Good info sites?

Posted by Sylva Cassells on February 19, 2017

2 Specialist in Europe

Specialist in Europe

Posted by Judit Zicher on February 3, 2017


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