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

Awareness, Support & Solutions!

A place to share, learn, and support each other. Our Mission is to increase awareness, provide support and help find solutions.

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Change and Awareness starts with US! We can make a stronger impact when we work together, that's why we say, Together We Are Stronger (R).

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Please click on the Subscribe button to pay Subscription ($15/Year) to Carion Fenn Network, and help connect those affected by Syringomyelia, Chiari Malformation, and Rare Diseases/Disorders 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.

Subscribers Receive:

~2 Wristbands  ~2 Brochures  ~Thank you Letter

~Subscriber Group Access  ~Banner on profile

~Support Group Access ~Newsletter (Coming)

Thank you for your support! (April 5/16)

Purchase SM & CM 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

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.

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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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Happening righ now:

Rare Disease Support Group Meeting at Ajax Public Library 6:30pm - 8:30pm. Lick on the link below to Access. ;

What is Syringomyelia, Chiari Malformation, and Rare Disease?

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: 1 in 12 Canadians have a rare disease. When a rare disease affects fewer than 200,000 Americans at any given time, the disease is defined as rare in the USA. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare.

Latest Activity

Shaun Kelly joined Carion Fenn Network's group

Dietitians Corner

Thinking about living a healthier life with Chronic Pain? Cristina Montoya, Arthritis Dietitian can…See More
5 hours ago
Shaun Kelly replied to Carion Fenn Network's discussion What time do you stop eating at night? in the group Dietitians Corner
"G'day Everyone,                      …"
5 hours ago
Profile IconShaun Kelly, Lori Hart (SM) angel/Canada Rep and 3 other members joined Carion Fenn Network's group


Neurofibromatosi is a genetic neurological disorder classified into two distinct types NF1 and NF2.…See More
5 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep commented on Carion Fenn Network's group Fund Raising
"that sounds great Ken but you can't expect the winner to pay the shipping after they just paid…"
11 hours ago

Become A Subscriber To Carion Fenn Network & Help Build our Community!

Subscribe to our Carion Fenn Network, and help connect those affected by Syringomyelia, Chiari Malformation & other Rare Diseases around the world. Membership to our Network is always free, but the cost to maintain the network is not, which is why we are seeking members to become Subscribing Members of our online community! For the small contribution of $15.00 a year you can become a subscriber to the Carion Fenn Network; helping our team provide educational information, helpful resources, and provide support those affected by Syringomyelia, Chiari Malformation & Rare Diseases around the world. The Network is administered by volunteer members who dedicate their time and knowledge to providing our members and subscribers with the best possible resources and support. As we grow and add new things to the network, we will create new perks for subscribers.
  • Syringomyelia or Chiari Malformation Wristband (1)
  • Syringomyelia or Chiari Malformation Brochure (1)
  • Thank you letter
  • 1 year subscription
  • Subscriber banner on Profile Picture
  • Network Membership (Access)
  • Network Chat Room (Access)
  • Online Support Groups (Access)

It’s the responsibility of our subscribers to take the initiatives to be a part of the Chat Room or Online Support Groups, space is limited and based on a first come first serve system - all members have the same opportunity to be apart of the support programs we provide.)

If you are not a member of our network, after paying for your subscription, please visit our network and request a membership. Subscribers are responsible to ensure that they request membership from our network at

Blog Posts

Pictures needed from patients who have Syringomyelia, Chiari Malformation and other Rare Diseases / Disorders

Posted by Carion Fenn Network on April 21, 2016 at 12:23pm 0 Comments

Pictures needed from patients who have Syringomyelia, Chiari Malformation and other Rare Diseases / Disorders.

We need more pictures of patients to show what they go through, surgeries etc... for our Websites, Carion Fenn…


I know why I no longer share...

Posted by Kenn Pond {ACM}{SM}{ZipperHead} on March 27, 2016 at 11:48am 0 Comments

There was a time on this page when I knew who I was chatting with. Sometimes intimate details about experiences.

However, I have seen more and more come here begging for information yet refuse to share, ever. No photo really bugs me. No…


G'day all from the land down under

Posted by Shaun Kelly on March 16, 2016 at 4:08am 5 Comments

G'day All my name Shaun Kelly I live in Gympie Queensland Australia.

I have read with great interest over the last six months of peoples stories  and how they deal with their disease and symptoms, it was a great relieve for me to find this…



Doctor finally listening 1 Reply

OK, so my doctor is finally beginning to listen to me. I've tried really hard not to "tell my doctor his business" but I have continuously brought up this group, and a reference that I saw in this group to some studies done by the NIH. I have a…Continue

Started by Patrick Milligan. Last reply by Lori Hart (SM) angel/Canada Rep on Thursday.

Looking for a doctor 1 Reply

I am looking for a better pediatric neurosurgeon for my son. Somewhere in Texas preferably DFW area.

Started by Kristen . Last reply by Lori Hart (SM) angel/Canada Rep Apr 18.

Collate information 5 Replies

G'day All,           I was wondering if there is some where on this site were all information recieved on peoples condition type, symptoms, action taken, handy hints etc is collated for reference.For example I have a syrinx T9 - T11 caused by…Continue

Started by Shaun Kelly. Last reply by Lori Hart (SM) angel/Canada Rep Apr 11.

Difficulty Urinating 17 Replies

I was wondering if anyone of you have had difficulty urinating because you are in so much pain. I feel the need to go, but I am so tight and in so much pain that I can not pee. This is not the first time I have had this problem, but today was the…Continue

Started by Mary Rudy (SM). Last reply by Lesley Micallef Apr 3.

Top Discussions 

1 Can you eat Bananas to fill my stomach!

Can you eat Bananas to fill my stomach!

Posted by Carion Fenn Network on April 21, 2016

2 Doctor finally listening

Doctor finally listening

Posted by Patrick Milligan on April 27, 2016

3 Looking for a doctor

Looking for a doctor

Posted by Kristen on April 13, 2016


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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. 


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



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