Online 24 Hour Social Network Community Support for those affected by Syringomyelia, Chiari Malformation, Rare Diseases & Chronic Diseases.

Subscribe or Donate to HELP Maintain Support.

The Carion Fenn Network has worked hard over the past 9 years to provide the support and resources you need so that you would not have to go through this alone. 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 yearly or donate yearly to help us keep providing our community worldwide.

Keep in mind that we may have members who can't afford to subscribe and need the support so if you can subscribe and or donate, please do so that someone who can't may continue to have the support they need. With your contribution, you are helping our team provide educational information, helpful resources, and provide support for those affected by Syringomyelia, Chiari Malformation, Rare Diseases, Rare Disorders and Chronic Disease Management 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

It's the responsibility of our subscribers to take the initiative to be apart of the Chat Room or Online Support Group Meetings. Thank you for your support!

A place to Share, Learn & Support!

 

ads...

 

Order 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
Colour

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. 

 

Google Ads...

Mental Health Forum 2017

Google Ads......

Badge

Loading…

Next Support Group Meeting December 14th 2017 6:30PM - 8:30PM EST

Topic: Hard to Insure and Mood Management Over Time (Support Group Meeting)

Host: Carion Fenn Foundation in partnership with Ajax Public Library 

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/BKFGZYRY  

Latest Activity


Network Supervisor
Lori Hart (SM) Canadian Rep added a discussion to the group St. Catharines Network
Thumbnail

Accessible Businesses

For Members living in St. Catharines, Niagara Falls, Thorold, Fort Erie and surrounding areas...I…See More
15 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep added a discussion to the group Accessibility Centre
Thumbnail

New Type of Wheelchir

Have any of our members that require an electric power wheelchair heard about the new wheelchair…See More
15 hours ago

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

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

Our Causes

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. There are two major forms of Syringomyelia, acquired and congenital.

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. Chiari Malformation has several different causes.

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. 350 Million people globally are fighting rare diseases. Rare Diseases Impact more people than aid and cancer combined.

chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. 

Blog Posts

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:34pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…

Continue

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:34pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…

Continue

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:34pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…

Continue

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Posted by Carion Fenn Network on October 11, 2017 at 9:33pm 0 Comments

Do you have Chiari Malformation, live in Durham Region and would like to tell your story?

Carion Fenn is looking for two patients in the Durham, Ontario Canada area to talk to about chiari malformation on her new TV show Health 180 with…

Continue

Forum

Chest pain reflux 1 Reply

G'day All,                I was wondering does anyone out get symptoms of pressure on the chest hard to breath I Have been having these type of symptoms mostly at night when asleep and it wakes me up. I am not sure if part of the effects of my…Continue

Started by Shaun Kelly. Last reply by Lori Hart (SM) Canadian Rep Oct 30.

Please send prayers 1 Reply

One of our members could really use  our prayers right now, many of you may know Michael J Shepich and how strong he is for all of us; well its time we share our prayers and show support to his family and Michael himself. May he find strength and…Continue

Started by Lori Hart (SM) Canadian Rep. Last reply by Shaun Kelly Oct 21.

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.

Photos

  • Add Photos
  • View All

Network Change Announcement Posted by Carion Fenn Network on September 2, 2017 at 10:02pm

To our Members,

The Carion Fenn Network has worked hard over the past 9 years to provide the support and resources for you so that you would not have to go through this alone.

Over the years we've been providing resources and emotional support to help you. So now we need your help in order to keep providing a place where we can bond together, support each others in having a place to share, learn and supporting each other.

Moving forward we will be asking for a Subscription fee or/ and donation to help us maintain this well needed support network for our community. If we do not ask for a Subcription Fee or Donation; we will no longer be able to keep the network available to everyone. If enough members step up to subscribe and or donate then we can offer this service to everyone. But we need your help.

The network will continue to be available to those who already subscribed to our network and new subscribers but those who do not subscribe or donate may lose access in the future. Its our hope to keep this network available to everyone but we can't do this alone, we need your to help.

Keep in mind that we may have members who can't afford to subscribe and need the support so if you can subscribe and or donate, please do so that someone who can't may continue to have the support they need.

Please click on the subcribe button to the left to subscribe to our network and or make a donation to keep our community together.

It has been a pleasure helping so many affected find a place and know they aren't alone. Too many are suffering in silence and our network provide a home for everyone.
Thank you for our support.

Carion Fenn Network

DISCLAIMER

Our websites are intended for information purposes only and may or may not apply to you. We are not doctors and we do not give medical advice. We do not endorse any doctors, products or procedures. Always consult a qualified medical professional for medical care. Please refer to our terms of service before using our sites.  Terms of  Service

 
 
 

© 2017   Created by Carion Fenn Network.   Powered by

Badges  |  Report an Issue  |  Terms of Service