Rare Disease Community Support for those affected by Syringomyelia, Chiari Malformation, EDS, Epilepsy, Arthritis & other Diseases/Disorders

A place to Share, Learn & Support!



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:

  • 1 Year Subscription
  • Past Support Group Meeting Recording (Access) 
  • Past Support Group Meeting Expert Presentation Slideshow. (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!

Order 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

Debra Hutchison (Host Rogers TV- Talk Durham), Nancy (CFSCN Member), Carion Fenn (Founder), Carion Fenn Syringomyelia & Chiari Network), & Kellie (CFSCN Member).

Debra Talked to Carion, members of our social  network (Nancy & Kellie), & Callers including Jamie McDonaldSueHarlen & 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. 


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Mental Health Forum 2017

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Next Support Group Meeting July 13, 2017 6:30PM - 8:30PM EST

Topic: Tea Talk for Health & Wellness

Host: Carion Fenn Foundation in partnership with Ajax Public Library and supported by Rotary Club of Ajax.

Presenters: Sophia Bishop

<Click Here to Register Now>

Note: We are accessible WORLDWIDE, allowing everyone to join in on our support group meetings. Come and see, talk with the expert in REAL time 6:30-8:30 pm EST TICKETS ARE FREE.

How to access support: 

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

2) Online - Skype: https://meet.lync.com/carionfennfoundation-carionfenn/cgf/V04PSQ63 

3) Phone:  +1 (647) 749-7011  Conference ID: 38291877

Find a local number: https://dialin.lync.com/carionfenn.org/smcm  

Latest Activity

Subscriber (SM/CM)
Carion Fenn Network replied to Lori Hart (SM) Canadian Rep's discussion Genetic Testing in the group Syringomyelia (Canada)
"Sylva, your very open and its important to be open to knowing what is going on with your body. Not…"
1 hour ago

Member (SM)
Sylva Cassells replied to Lori Hart (SM) Canadian Rep's discussion Genetic Testing in the group Syringomyelia (Canada)
"I would. I'm pretty curious. :) I'm not afraid of answers."
2 hours ago

Member (SM)
Sylva Cassells joined Carion Fenn Network's group

Syringomyelia (Canada)

This group is for Canadians who are living with Syringomyelia. Please join, show your Canadian…See More
2 hours ago
Michael A. Carter is now a member of Carion Fenn Network (Syringomyelia, Chiari & Rare Disease)
23 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

How does everyone feel about Genetic Testing?

Posted by Lori Hart (SM) Canadian Rep on July 13, 2017 at 1:00am 0 Comments

Just curious as to what everyones views are about genetic testing.  Some feel its a good thing to have done others say why put yourself through additional stress. Lets hear from our members

When your rights as a person with a disability is violated

Posted by Carion Fenn Network on May 21, 2017 at 4:02am 2 Comments

Have you ever been violated? Are you frequently violated? Do you think its ok to be violated? Do you think you should do something about it? Do you have have a responsibility to complain?

When you are violated it litterally takes…


Bilateral Vestibular Hypofunction.

Posted by Stacey Miotke on April 16, 2017 at 1:31pm 5 Comments

Does anyone else have this? My symptoms are better with medication, however if I don't take it, I have very Little quality of life. I have a hard time driving. Anything in a mirror, crafting, doing my makeup.

I have had some symptoms most… Continue

Well wishes and Prayers

Posted by Lori Hart (SM) Canadian Rep on April 3, 2017 at 2:26am 0 Comments

Our Welcoming Angel Rochelle Basil is having surgery in the morning, please let her know we are thinking about her and wishing her well.


What would you like Doctor's to know?

We all know the difficulties we face with any doctors not taking our concerns seriously. If you could have a consequence free day... what would you want to tell your doctor to get them to completely understand how them not taking you serious…Continue

Started by Lori Hart (SM) Canadian Rep on Tuesday.

How do you feel about Genetic Testing?

I am curious, given the advancements in our medical technology, do you feel that genetic testing is a good or bad thing?How many of you would want to know what you may or may not be predisposed to having at some pount during your lifetime? Continue

Started by Lori Hart (SM) Canadian Rep Jul 16.

Join us for an Open & Honest Discussion about Mental Health

October 10, 2017 5:00pm – 9:00pm EasternMental Health ForumHost: Carion Fenn…Continue

Tags: october10, ajaxpubliclibrary, international, mentalhealthday, mentalhhealthforum

Started by Carion Fenn Network Jul 3.

Social security evaluation 1 Reply

Has anyone ever lost disability benefits due to a social security review?

Started by Billy Dale Mutchler . Last reply by Lori Hart (SM) Canadian Rep May 29.

Top Discussions 


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