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
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.
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: 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 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.
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.
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.
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
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
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.
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
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.
by Carion Fenn Added June 10, 2016 at 1:35am
by Carion Fenn Added December 5, 2015 at 9:40am
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