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

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Rare Disease Health & Wellness Expo

Subscriber & 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!

Awareness 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
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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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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


Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Ronald Remy
"Happy Birthday Ronald !!! From all of us here !!!! Best wishes Lori xo"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Krista Clover (SM) (ACM)
"Happy Birthday Krista !!! From all of us here !!!!! Best wishes Lori xo"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Josie sm cm
"Happy Birthday Josie !!! From all of us here!!! Best wishes Lori xo"
11 hours ago

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Christy Schettler
"Happy Birthday Christy!!! From all of us here! !! Best wishes Lori xo"
11 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

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) angel/Canada Rep on July 29, 2016 at 3:08pm 7 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

Losing right foot

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 17 hours ago.

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 17 hours ago.

heavy feeling keeping me from walking 7 Replies

not asking medical advice , just wondering , I suffer from naropothy/nerve pain. But last night it started hurting in my lower back half of both legs and feels like  their in a vice grip or being held down by a 100 pound log, so right now i…Continue

Started by Betty Corey. Last reply by Shaun Kelly on Friday.

headaches 3 Replies

Can I ask a question and I will keep it short as I can.I was told by my last MRI, there was not much change,then no change, because i wanted to be clear, cause lasttest i was not given all results till one year later andby another doctor, maybe it…Continue

Started by Betty Corey. Last reply by Betty Corey on Thursday.

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