Topic: Engaging & Gaining Support
Presenter: Frank Kennedy
How to Access Support:
1) Local: Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada
Space is limited.
2) Online: SKYPE: https://meet.lync.com/carionfennfoundation-carionfenn/cgf/589KB754 ;
3) Phone: +1 (647) 749-7011 Conference ID: 9833479
Find a local number: https://dialin.lync.com/
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.
Libby Walden has brought it to our attention the her beloved husband Jimmy has lost his battle with Syringomyelia on the 23rd of October.
please send her and her family your prayers and condolences…Continue
Are you good at engaging in conversation? Do you want to help people and let them know that they aren't alone on this journey?
THEN WE WANT YOU!!!!!
If your interested in volunteering please leave me a comment below, I look forward…Continue
We would like to invite you to join us in our participation in the Town of Ajax, Ontario Canada
lining the parade route for our #HMSAjax40 Special Parade & Ice Cream Social on August 28, 2016.
Hi everyone,Im a 27 yo male who was diagnosed recently with SM. Over the last three years my symptoms progressed.Four years ago I had no symptoms at all. Three years ago I experienced symptoms for the first time when I squatted with 150 kg on my…Continue
Started by Mousse K (SM). Last reply by Ken Anderson [sm] Sep 23.
Afternoon everybody, feeling down, something is slowly paralizng my hands and feet, I have had to wear a postetic brace on my left foot for over a year now. Now my right foot is staring, I only feel it on the right side of it and it that part hurts…Continue
Started by Betty Corey. Last reply by Betty Corey Sep 1.
Afternoon everyone, feeling down, something is slowly paralyzing my hands and feet. I already have to wear a postetic brace on my left foot, for over a year now, but now I am losing my right foot also, about the only feeling i have in it is at the…Continue
Started by Betty Corey Aug 29.
Posted by Lori Hart (SM) Canadian Rep on November 19, 2016
Posted by Lori Hart (SM) Canadian Rep on November 10, 2016
Posted by Lori Hart (SM) Canadian Rep on November 8, 2016
by Carion Fenn Network Added June 10, 2016 at 1:35am
by Carion Fenn Network Added December 5, 2015 at 9:40am
by Carion Fenn Network Added September 15, 2015 at 10:39am
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