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

 

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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 April 13, 2017 6:30PM - 8:30PM EST

Topic: Reiki

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

Presenter: Abueng Bernard

<Click Here to Register Now> to enter our draw to WIN a FREE Reiki Treatment.

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/SHQP68SG 

3) Phone:  +1 (647) 749-7011  Conference ID: 73987011

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

Latest Activity


Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Farhan Khan
"Welcome to our Family Farhan!!! Here are some links (might be worth to review if you haven't…"
5 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep commented on Carion Fenn Network's group Europe
"Reaching out to our Europe Group members...Rikki Du Heaume, Rhonda McBride and Jennifer Grangel I…"
5 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Abueng Bernard
"Welcome to our Family Abueng!!!! Looking forward to learning more from you.... As are our other…"
5 hours ago

Subscriber (SM/CM)
Carion Fenn Network commented on Carion Fenn Network's group Ehlers Danlos Syndrome
"Jayme your welcome. "
7 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

Anyone interested in learning about Reiki and the health benefits?

Posted by Lori Hart (SM) Canadian Rep on March 17, 2017 at 12:00am 10 Comments

We would like to know how many of our members would be interested in learning about Reiki as an alternative treatment.

We have had an amazing offer from a Reiki Master to come speak at an up and coming Support Group Meeting.

Please…

Continue

How many have had gall bladder out since SM diagnois?

Posted by lindaj (SM) on March 8, 2017 at 12:00am 10 Comments

Hi everyone

I was in a mva 5 years ago and have had sm since that car wreck.  I am now being told I need to have my gall bladder out.  I would like to know how many with thorascic syrinx have had their gall bladder out since their…

Continue

My awesome support

Posted by Sylva Cassells on March 6, 2017 at 6:38pm 2 Comments

I'm a person who likes answers. I hate things unsolved to the point where as a child I volunteered to do math questions and filled in math books because it tormented me to see them blank.



I worry, panic and stress about every possible… Continue

Frustration

Posted by Sylva Cassells on March 3, 2017 at 9:00am 7 Comments

I was always active. I played sports in highschool, I have run half marathons and obstacle races. I was no athlete, but I wasn't unfit either.



My life was pretty darn good. I've traveled to 24 countries lived abroad 3 times for a total of… Continue

Forum

Looking for Syringomyelia/Chiari Mal Specialist in Vancouver BC

Looking for Syringomyelia/Chiari Malformation Specialized medical practitioner in Vancouver, BC

Started by D. K. Calyniuk on Monday.

Looking for a syringomyelia specialists in Edmonton 1 Reply

Please advise

Started by Catherine . Last reply by Lori Hart (SM) Canadian Rep Mar 23.

Latest MRI 3 Replies

Early morning again all,  I just recently got another MRI done, and there were some changes on it. I don't post here much, and alot of times I never get any responces either. No offence but if no one responds I am asking my question in my other…Continue

Started by Betty Corey. Last reply by Rochelle Basil Mar 10.

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.

Top Discussions 

1 Latest MRI

Latest MRI

Posted by Betty Corey on February 25, 2017

2 Movie Recommendations PLEASE

Movie Recommendations PLEASE

Posted by Lori Hart (SM) Canadian Rep on March 20, 2017

3 Looking for a new Dr - central coast California

Looking for a new Dr - central coast California

Posted by Brona Wince (SM) on March 8, 2017

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