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

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Subscribe to our Network, and help build our community support. The cost to maintain the network is not free, 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!

A place to Share, Learn & Support!

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

         

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Videos:

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 September 14, 2017 6:30PM - 8:30PM EST

Topic: Alternative Therapies

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

Presenters: Dr. Sandra Miranda, Naturopathic Doctor, and Michael Gauthier, Chiropractor

How to access our Support Group Meeting:

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/W6C7ZRKM

Latest Activity


Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Kerr Curtis
"Happy Birthday Kerr, from everyone here!!! Best wishes Lori xo"
5 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Dixie Stevens CM
"Happy Birthday Dixie, from everyone here!!! Best wishes Lori xo"
6 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for debbie vick
"Happy Birthday Debbie, from everyone here!!! Best wishes Lori xo"
6 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Andrea Russell (SM)
"Happy Birthday Andrea, fro everyone here!!! Best wishes Lori xo"
6 hours ago

Definitions:

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

I need support

Posted by Kelly Eckstein on August 9, 2017 at 7:06pm 5 Comments

I just lost my best friend since I was 4 because she doesn't understand my disease . She even told me that to my face . We tried to make up , but because my meds made me loopy she left even though I had concert to tickets to my favorite band on my… Continue

Your Feedback on Topic for New Health TV Show

Posted by Carion Fenn Network on August 3, 2017 at 7:56am 0 Comments

*NEW* - Well I'm back doing TV, I'm hosting and producing a new Health TV Show on Rogers TV. Yay! Teaching the community how to take care of themselves and how to restart your life after an ailment/Rare Disease or Disorders. I will speak…

Continue

How does everyone feel about Genetic Testing?

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

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

Forum

Prayers needed

Please join us in wishing our volunteer Beverly Holtzman a successful Lung transplant & recovery today. Keep her in your thoughts & prayers.Continue

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

What would you like Doctor's to know? 5 Replies

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. Last reply by Lori Hart (SM) Canadian Rep Sep 9.

Medical Breakthrough

Wouldn't this be great, if it becomes available?…Continue

Started by Lori Hart (SM) Canadian Rep Sep 4.

Topics ?? 10 Replies

Do you have a topic you would like discussed or just to know more about? Then let me know and I will post about it.I know many of you prefer to read the blogs rather than comment but without your participation that nagging question can't get…Continue

Started by Lori Hart (SM) Canadian Rep. Last reply by Murray Smith Sep 3.

Top Discussions 

1 Topics ??

Topics ??

Posted by Lori Hart (SM) Canadian Rep on July 30, 2017

2 What would you like Doctor's to know?

What would you like Doctor's to know?

Posted by Lori Hart (SM) Canadian Rep on July 18, 2017

3 Shunt Study

Shunt Study

Posted by Lori Hart (SM) Canadian Rep on August 31, 2017

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