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
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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

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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

Breaking Down 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 https://www.eventbrite.ca/e/breaking-down-pain-tickets-28305904723

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/C7NR38PN

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

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

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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

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 9 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…

Continue

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…

Continue

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?

THEN WE WANT YOU!!!!!

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

Continue

ANY ONE HAVE SIMILAR SYMPTOMS?

Posted by Carion Fenn Network on October 7, 2016 at 5:28pm 8 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…

Continue

Forum

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.

Tethered Cord Surgery 6 Replies

Hi everyone!I was wondering if anyone has had tethered cord surgery? I would sincerely appreciate your knowledge and/or experience. I was referred by my neurosurgeon to see a spinal neurosurgeon and he talked about tethered cord surgery and also…Continue

Started by Mary Rudy (SM). Last reply by Adriana (SM) Jan 1.

Other Conditions that sometimes go along with Chiari/Syringomyelia 13 Replies

Chiari 0 Chiari I Malformation (CMI) is one of several identified malformations of the hindbrain, which consists of the cerebellum, pons, and medulla oblongata. Additionally, the back part of the skull (posterior fossa) is too small, and the…Continue

Started by Abby. Last reply by Becky Smith Dec 28, 2016.

Top Discussions 

1 frustration

frustration

Posted by Becky Smith on December 20, 2016

2 Tethered Cord Surgery

Tethered Cord Surgery

Posted by Mary Rudy (SM) on December 8, 2016

3 Chiari headaches

Chiari headaches

Posted by Betty Corey on January 10, 2017

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