Carion Fenn Network

Watch Health 180 with Carion Fenn RogersTV Durham Channel 10 Tuesdays 6:30pm Est

Syringomyelia, Chiari Malformation, Rare & Chronic Diseases Support Community. A place to share, learn & support each other worldwide.

Connect with others!

Welcome to our Network

Welcome to our network. Glad you are here with us. Feel free to browse around and get to know our community. You can read other members profiles to see what they are going through, what treatment or medications they are trying and how they have been coping. Have questions? Want to hear from others or engage with our members? Start a blog, forum or join our groups. At the top of our website are tabs to help you get familiar with our network. Check out our events page for upcoming events, like our monthly support group educational workshops with others as well as experts giving a presentation at each meeting. You can join the meeting using Skype or at the Ajax Public Library Main Branch. Membership to our network is free, however you can become a subscriber or donate to help build our network and support our community. Details to your left and scroll up or down. Also available is information for you get your wristband to help increase awareness. Again, welcome to our community. No one should every be alone with an ailments and its important to get support and support each other because Together We Are Stronger. God Bless. Carion Fenn Network.

www.togetherwearestronger.org   

Subscribe to our Network

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. We are asking members to become subscribers for $20 yearly since the cost to maintain the network is not free. Join in helping to maintain support and keep providing our community worldwide.

Subscription Includes:

  •  1 Year Subscription
  • Feature your Story in Newsletter (Optional)
  • Be a guest on TV Show (Optional)
  • Feature Member Listing
  • Behind the scenes footage of Health 180 with Carion Fenn. 
  • Support Group Meeting Expert Presentation Slideshows. (Access)
  • Subscriber Banner on Profile Picture
  • Access to Blogs and Forum about Health 180 with Carion Fenn TV Show Episodes. 

It's the responsibility of our subscribers to take the initiative to be apart of the optional features. Feature for newsletter or TV Show will be through a selection process of subscribers. Thank you for your support!

<Click here> to join our Subscriber Group after payment. 

Donate to Support our Network

Carion Fenn Network focuses on providing the platform for our members to support each other. With your contribution, you are helping our team provide educational information, helpful resources, and provide support to our members needed to navigate their ailments. Every donation matters in ensuring that our network is available to everyone. Keep in mind that we do have members who can't afford to subscribe or donate who need the support so if you can donate, please do so that someone who can't may continue to have the support they need.

Order your Wristbands NOW

Show Support for your cause(s):

Help support our Network & its innitiatives by purchasing and wearing our Syringomyelia & Chiari Malformation Awareness Wristbands custom designed by those affected: Blue and Purple. Order Now!

         

Syringomyelia & Chiari Wristband
Colour

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

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. 

 

Badge

Loading…

Upcoming Events:

1) Research for Rare Disease-Support Group Meeting

Host: Carion Fenn Foundation in partnership with Ajax Public Library.

Presenter: Simon Stones, Research Advisor 

Time and Location: Ajax Public Library (Main Branch) 55 Harwood Avenue South Ajax L1S 2H8 Candada. 6:30 pm - 8:30 pm

Register at:  https://www.eventbrite.ca/e/research-for-rare-disease-support-group-meeting-tickets-48275691894 

Skype: : https://meet.lync.com/carionfennfoundation-carionfenn/cgf/SWF2RSGR 

2) Please attend Carion Fenn Foundation’s Second Annual Mental Health Forum in partnership with Ajax Public Library, recognizing Mental Health Awareness Day October 10, 2018 5pm.

 

Latest Activity


Member (SM)
Sylva Cassells posted a blog post

MiA

So I've been hiding from this group for some time. Probably about a year. I moved away from my…See More
11 hours ago

Member (SM)
Sylva Cassells commented on Carion Fenn's blog post Would you rather one million dollar or one million smiles?
"Depends, is it like you can't get anymore money or smiles depending on which one you choose?…"
12 hours ago

Subscriber (SM/CM)
Carion Fenn left a comment for Sue Sandstrom (SM)
"Happy Birthday, We hope you enjoy your special day. Wishing you all the best.. Carion Fenn…"
15 hours ago

Subscriber (SM/CM)
Carion Fenn left a comment for RHODA LLAMADO (SM)
"Happy Birthday, We hope you enjoy your special day. Wishing you all the best.. Carion Fenn…"
15 hours ago

Our Global 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.
  • Symptoms develop slowly over time and may occur on one or both sides of the body.  
  • Syringomyelia may also be caused by spinal cord injuries, spinal cord tumors, and damage caused by inflammation in around the spinal cord. In some cases, the cause is unknown (idiopathic).

Chiari Malformation (CM) Key-Ar-ee-mal-for-MAY-shun: 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.
  • Later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to traumatic injury, disease, or infection. This is called acquired or secondary Chiari malformation. 
  • By structural defects in the brain and spinal cord that occur during fetal development. This can be the result of genetic mutations or a maternal diet that lacked certain vitamins or nutrients. This is called primary or congenital Chiari malformation.  

Rare Disease: 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. 

  • 350 Million people globally are fighting rare diseases.
  • Rare Diseases Impact more people than aids and cancer combined.
  • Approximately 50% of the people affected by rare diseases are children; 30% of children with rare disease will not live to see their 5th birthday.

Chronic Disease: A 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. 

  • Chronic diseases such as diabetes, cancer, arthritis, mental illness, and cardiovascular and chronic respiratory diseases are major contributors to reduced quality of life, loss of productivity, and increased hospitalization and health care costs as well as premature death in Canada.
  • Out of every 5 Canadians aged 20 years or older, 3 have a chronic disease and 4 are at risk of developing a chronic condition.

Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases. 

Blog Posts

MiA

Posted by Sylva Cassells on August 15, 2018 at 8:00am 0 Comments

So I've been hiding from this group for some time. Probably about a year. I moved away from my Pickering area and am now quite a bit further away.

I went back to school, finished my first year; will be starting second soon. School…

Continue

Spam emails??

Posted by Lucille on August 13, 2018 at 8:38am 1 Comment

I have received 2 emails, one from Mrs.Perious Dankwa and one from PRECIOUS ROMEO. It looked fishy so I did not reply on the mails. How can I NOT receive emails like that?

PLEASE SIGN NOW!

Posted by Mary Rudy (SM) on July 11, 2018 at 11:24pm 1 Comment

Hi everyone!

i just want to emphasize how important it is for all of us to take a few seconds to sign the petition to recognize Rare Disease day in Canada.

i must admit that I am personally disappointed and shocked that there are…

Continue

Forum

We Need to Talk

G'day Everyone,                           I am concerned at the lack of discussion on this site and wonder why discussion has drop off. I have found this site the best for it. I have tried the facebook sites etc but find they do not have the same…Continue

Started by Shaun Kelly in Uncategorized Jul 17.

Osteopath

I am thinking of going to see an osteopath.  I would sincerely appreciate your personal experience if you have sm and have seen an osteopath.  Can seeing an osteopath harm us?Just do not know what to do anymore.....Waiting anxiously!MaryContinue

Started by Mary Rudy (SM) in Sample Title Jul 11.

Pain 2 Replies

G'day All,              A brief on my current condition, Tumor T9 to T11 with syrinx elongated whole spine to top of neck,I have lost properception in left leg,I walk aided either crutches or wheelie walker. I have had a good run with pain only…Continue

Started by Shaun Kelly in Uncategorized. Last reply by Shaun Kelly Jun 14.

Call to All Canadian, Please Sign Our Petition to Recognize Rare Disease Day Federally

Calling all Canadians and Residents of Canada to Action! Rare Disease Day is NOT recognized in Canada Federally by the Government of Canada, although we celebrate this special day each year with our international friends. Mayors in Cities and Towns…Continue

Started by Carion Fenn in Sample Title Jun 12.

Photos

  • Add Photos
  • View All

Coming Soon!

...

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

 
 
 

© 2018   Created by Carion Fenn.   Powered by

Badges  |  Report an Issue  |  Terms of Service