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

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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:

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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!

Awareness Wristbands

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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Events

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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September 8, 2016 6:30PM - 8:30PM

Rare Disease Health & Wellness Support Group

Topic: Aqua Fitness

Presenter: Town of Ajax - Recreations
How to Access Support:

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

2) ONLINE - SKYPE: https://meet.lync.com/carionfennfoundation-carionfenn/cgf/7FDC6H0D

3) Phone: +1 (647) 749-7011 Conference ID: 5005192 

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

Latest Activity

Tanya replied to Tanya's discussion Looking for a Neurosurgeon in BC and suggestions?
"Thank you. Will contact them.  Have a great weekend.  "
yesterday

Member (SM)
Ken Anderson [sm] replied to Mousse K (SM)'s discussion Post-Traumatic SM surgery
"your absolutely correct. sm wants to wreck havoc on your body. I had a shunt installed 1985 and it…"
yesterday

Member (SM)
Ken Anderson [sm] replied to Tanya's discussion Looking for a Neurosurgeon in BC and suggestions?
"contact: Blusson Spinal Cord Centre 818 West 10th Ave Vancouver 604 675 8800 "
yesterday
Kelly updated their profile
yesterday

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

Participants Needed: Town of Ajax - Lining the parade route for our #HMSAjax40 Special Parade & Ice Cream Social on August 28, 2016.

Posted by Carion Fenn Network on August 10, 2016 at 10:59am 0 Comments

Good afternoon,

We would like to invite you to join us in our participation in the Town of Ajax, Ontario Canada

lining the parade route for our #HMSAjax40 Special Parade & Ice Cream Social on August 28, 2016.

We…

Continue

would anyone be interested in easy meal Ideas ?

Posted by Lori Hart (SM) on July 29, 2016 at 3:08pm 5 Comments

Some of our members have asked if we could perhaps do something in the way of easy to prepare

meals etc. We all experience a challenge with standing for long periods or hand weakness. If this is of interest to anyone I want to hear from…

Continue

Beginning signs

Posted by Guy Tortorici on July 24, 2016 at 11:08pm 6 Comments

Hi all.  I have a question I am hoping someone can help me with.  My son, 22, college student, was diagnosed with syringomyelia last year.  It started out with tingling in his pinky finger.  We initially thought it was ulnar nerve related because…

Continue

Can pain cause a fever

Posted by Julie Moskal on July 21, 2016 at 11:25pm 6 Comments

I have felt like I have the flu for the past 10 days. Doctor told me I have sinus infection. I have had moderate to severe pain in my upper body from across the middle of my back to my arms, my neck is throbbing along with my jaws and head. Along… Continue

Forum

Looking for a Neurosurgeon in BC and suggestions? 2 Replies

Hello: I am looking for a Neurosurgeon with experience.  Hopefully in Vancouver or the Okanagan.Does anyone have an suggestions?- Tanya Continue

Started by Tanya. Last reply by Tanya yesterday.

Post-Traumatic SM surgery 10 Replies

Hi everyone,Im a 27 yo male who was diagnosed recently with SM. Over the last three years my symptoms progressed.Four years ago I had no symptoms at all. Three years ago I experienced symptoms for the first time when I squatted with 150 kg on my…Continue

Started by Mousse K (SM). Last reply by Ken Anderson [sm] yesterday.

Losing right foot 4 Replies

Afternoon everybody, feeling down, something is slowly paralizng my hands and feet, I have had to wear a postetic brace on my left foot for over a year now. Now my right foot is staring, I only feel it on the right side of it and it that part hurts…Continue

Started by Betty Corey. Last reply by Betty Corey Sep 1.

Losing my right foot.

Afternoon everyone, feeling down, something is slowly paralyzing my hands and feet. I already have to wear a postetic brace on my left foot, for over a year now, but now I am losing my right foot also, about the only feeling i have in it is at the…Continue

Started by Betty Corey Aug 29.

Top Discussions 

1 September 2010, Leslie Alexander (sm)

September 2010, Leslie Alexander (sm)

Posted by Carion Fenn Network on February 29, 2012

2 Losing right foot

Losing right foot

Posted by Betty Corey on August 29, 2016

3 Looking for a Neurosurgeon in BC and suggestions?

Looking for a Neurosurgeon in BC and suggestions?

Posted by Tanya on September 13, 2016

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