Carion Fenn Network

Syringomyelia, Chiari Malformation, Rare & Chronic Diseases and Seniors Support.

Welcome to Carion Fenn Network. A place to share, learn & support. (Syringomyelia/Chiari Malformation/ Rare & Chronic Diseases & Seniors)

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. Membership to our network is free, however you can become a subscriber or donate to help build our network and support our community. Also available is information for you get your wristband to help increase awareness. Again, welcome to our community. No one should ever be alone with an ailments and its important to get support and support each other because Together We Are Stronger.

Carion Fenn Network.

Why Join?

 A place to share, learn and support each other. 

After being diagnosed nobody hands you a manual to tell you what to do, but one thing is for sure; you need a community where you feel like you belong and feel at home among friends. You might remember how scary it was, adjusting can be very emotional. We have patients who are recommended by family, friends and medical professionals where we provide a community of unconditional support.

Share: You don't always know what you are going to go through, what resources are available or out there. Sharing what you have learned with others, what medications are available, what therapies are helpful, It's a great way to show others that they are not alone in what they are experiencing and helping others to find the resources they need and deserve.

Learn: Learn about the Latest research, treatments, support group, events and what others are going through. Patients are not a substitution for professional medical care but only patients who are experiencing what you are going truly understand what its like. Join our community and learn from others just like you who have more experience. Help the newly diagnosed who are just starting their journey.

Support: Connect with other patients, friends, loved ones and those affected by Syringomyelia, Chiari Malformation, Rare Diseases, Rare Disorders and Chronic Diseases. It can be a lonely road coping with symptoms, seeking treatments or even a Specialist. Joining our community allows you to not be alone, gives you access to others who are also affected, joining monthly support group meetings and events. Great way of knowing and feeling that you are not alone. Welcome to our community!

Carion Fenn Network

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

Donate & Receive a Mental Health T-Shirt


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

Virtual Monthly Support Group Meeting

Posted by Carion Fenn Network on September 5, 2022 at 8:09am 0 Comments


We are looking to start a Monthly Support Group Meeting for those impacted by Syringomyelia, Chiari Malformation and Rare Diseases. A support to put in place after deactivating this network (Carion Fenn Network). We woudl…



Looking forward to summer, not sure what I can do, any suggestions during covid?

Looking forward to summer, not sure what I can do, any suggestions during covid-19?Question from a member, love to hear your feedback. Carion Fenn Network. Continue

Started by Carion Fenn Network in Sample Title Mar 18, 2021.

Virtual activities for seniors during Covid-19

Carion Fenn Foundation is launching a 12 week seniors program and looking for your ideas on what virtual programs can be done during Covid-19 to help our seniors community. Would love to heard your suggestions. Continue

Tags: seniors, virtualseniorsprogram, seniorsprogram

Started by Carion Fenn Network in Sample Title Oct 14, 2020.


  • Add Photos
  • View All


  • Add Videos
  • View All


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


© 2022   Created by Carion Fenn Network.   Powered by

Badges  |  Report an Issue  |  Terms of Service