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

A place to Share, Learn & Support!

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Subscribe to our Network, and help build our community. Membership to our Network is always free, but the cost to maintain the network is not, which is why we are seeking members to become Subscribing Members of our Online Community Support for the small contribution of $15.00/ year. You are helping our team provide educational information, helpful resources, and provide support for those affected by Syringomyelia, Chiari Malformation & Rare Diseases or Disorders around the world. As we grow and add new things to the network, we will create new perks for subscribers.
  • Wristband (2)
  • Brochure (2)
  • Thank you letter
  • 1 year subscription
  • Subscriber banner on Profile Picture
  • Network Membership (Access)
  • Network Chat Room (Access)
  • Online Support Groups (Access)

It’s the responsibility of our subscribers to take the initiatives to be a part of the Chat Room or Online Support Groups, space is limited and based on a first come first serve system - all members have the same opportunity to be apart of the support programs we provide.)

If you are not a member of our network, after paying for your subscription, please sign up for our membership. www.togetherwearestronger.org.

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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Next Support Group Meeting June 9, 2016 at 6:30pm.

Healthy Living & Chronic Pain Rare Disease Support Group Meeting at Ajax Public Library 6:30pm - 8:30pm. Click on the link below to join us. https://meet.lync.com/carionfennfoundation/smcm/ML4W6CP8

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: A condition affecting fewer than 1 person in 2000 in their lifetime. 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.

Latest Activity


Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Lee Harrison
"Happy Birthday Lee !!!! From all of us !!!! Best wishes Lori xo"
9 hours ago

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

Member (SM)
Lori Hart (SM) angel/Canada Rep left a comment for Susan
"Welcome to our Family Susan !!!!! Here are some links (might be worth to review if you…"
9 hours ago

Subscriber (CM)
Betty Corey posted a discussion

Getting a MRI to test for a syrix

After noon everyone, welcome new members to the group.I also have a question for the group.I seen…See More
12 hours ago

Blog Posts

Patients Needed: Carion Fenn Foundation Video Filming include Mayors, MPP & Patients.

Posted by Carion Fenn Network on May 22, 2016 at 10:30pm 0 Comments

Carion Fenn Foundation 1 year Anniversary Video with Video Pledges from Ajax & Pickering Mayors & MPP Michael Harris and more. We are filming our 1 anniversary video which we will be editing a 1 minute promo segment to promote our Rare…

Continue

syrinx/Tumor

Posted by Lunga Moeketsi on May 20, 2016 at 5:42am 4 Comments

Hi,

Can a synrinx develop into a spinal tumor? My synrinx has grew about 3 mm since my Posterior fossa decompression in 2013. i have a session with the Neurosurgeon on Monday to get the final…

Continue

Help with Genetic testing and an update.

Posted by Brian Anthony on May 13, 2016 at 1:06am 1 Comment

To refresh my story, I've been dealing with progressively disabling symptoms for the last 15 years.  I've been seen by Johns Hopkins, The Chiari Institute, and now a neuro muscular doc at Drexel.  She wants me to have genetic tests which I cannot…

Continue

Forum

Getting a MRI to test for a syrix

After noon everyone, welcome new members to the group.I also have a question for the group.I seen the neuro surgeon a fewdays ago. He has done shuntsurgies and decompression surgeries,so I feel confident he has enoughexperience. He told me my…Continue

Started by Betty Corey 12 hours ago.

Doctor finally listening 2 Replies

OK, so my doctor is finally beginning to listen to me. I've tried really hard not to "tell my doctor his business" but I have continuously brought up this group, and a reference that I saw in this group to some studies done by the NIH. I have a…Continue

Started by Patrick Milligan. Last reply by Jayme on Thursday.

Good morning all and a update on me. 5 Replies

Good morning to the group. Heres a update on me and it's been a while since I have posted here.The naropothy I have had moved into my chest, maybe from my neck and shoulder? At first I wasthinking it was my heart, so when I went to the doc, he told…Continue

Started by Betty Corey. Last reply by Betty Corey May 16.

Looking for a doctor 1 Reply

I am looking for a better pediatric neurosurgeon for my son. Somewhere in Texas preferably DFW area.

Started by Kristen . Last reply by Lori Hart (SM) angel/Canada Rep Apr 18.

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Proclamation Received

Town of Ajax             (Mayor Steve Parish)
City of Toronto           (Mayor Rob Ford)
City of Oshawa          (Mayor John Henry) 
City of Markham        (Mayor Scarpitti)
City of Pickering        (Mayor David Ryan) 
Town of Oakville       (Mayor Rob Burton) 
 
 
Syringomyelia & Chiari Malformation dates July 17 and September formally recognized by the Town of AJAX, On Canada Mayor Steve Parish for the first time in Canadian History in 2013. 

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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

 
 
 

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