Rare Disease Community Support for those affected by Syringomyelia, Chiari Malformation, EDS, Epilepsy, Arthritis & other Diseases/Disorders

A place to Share, Learn & Support!

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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 May 11, 2017 6:30PM - 8:30PM EST

Topic: Chiropractic and Naturopathic Treatments

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

Presenters: Dr. Michael Gauthier, Chiropractor and Dr. Chamandeep Bali, Naturopath

<Click Here to Register Now> 

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/JF7VDMWM   

3) Phone:  +1 (647) 749-7011  Conference ID: 92842049

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

Latest Activity


Network Supervisor
Lori Hart (SM) Canadian Rep replied to Lori Hart (SM) Canadian Rep's discussion Hello Group in the group Rare Disease Network
"Good questions Shaun! As I tend to answer before others I will hold off and give someone a chance…"
14 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Rachel
"Happy Birthday Rachel, from all of us here!! Best wishes Lori xo"
15 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Rachel
"Happy Birthday Rachel, from all of us here!!! Best wishes Lori xo"
15 hours ago

Network Supervisor
Lori Hart (SM) Canadian Rep left a comment for Brandy Lanz (SM)(ACM)
"Happy Birthday Brandy, from all of us here!!! Best wishes Lori xo"
15 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

When your rights as a person with a disability is violated

Posted by Carion Fenn Network on May 21, 2017 at 4:02am 1 Comment

Have you ever been violated? Are you frequently violated? Do you think its ok to be violated? Do you think you should do something about it? Do you have have a responsibility to complain?

When you are violated it litterally takes…

Continue

Bilateral Vestibular Hypofunction.

Posted by Stacey Miotke on April 16, 2017 at 1:31pm 3 Comments

Does anyone else have this? My symptoms are better with medication, however if I don't take it, I have very Little quality of life. I have a hard time driving. Anything in a mirror, crafting, doing my makeup.



I have had some symptoms most… Continue

Well wishes and Prayers

Posted by Lori Hart (SM) Canadian Rep on April 3, 2017 at 2:26am 0 Comments

Our Welcoming Angel Rochelle Basil is having surgery in the morning, please let her know we are thinking about her and wishing her well.

Calling ALL Members!!!!

Posted by Lori Hart (SM) Canadian Rep on March 30, 2017 at 1:25am 1 Comment

All of the Admin, Angels and Volunteers at the Carion Fenn Network are working hard to bring new and exciting changes to our Network. However we can't do it alone, we want you to have your say and tell us what kind of topics you would like see…

Continue

Forum

Social security evaluation

Has anyone ever lost disability benefits due to a social security review?

Started by Billy Dale Mutchler 18 hours ago.

Confussion 3 Replies

G'day All and a happy Easter,           I am confused and bewildered with my condition / symptoms doctors answers or lack of. I do not know if I make my self worse by trying to work it out and maybe find some miracle thing out there that might help…Continue

Started by Shaun Kelly. Last reply by Lori Hart (SM) Canadian Rep Apr 24.

Latest MRI 4 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 Lori Hart (SM) Canadian Rep Apr 12.

thanks 1 Reply

thanks lori for birthday wishes

Started by Betty Corey. Last reply by Lori Hart (SM) Canadian Rep Apr 9.

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