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In My Hands: A Story of Marfan Syndrome at CommFFest Film Festival, September 27, 2010 |
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The Canadian Marfan Association and COMMFFEST Global Community Film Festival, are proud to present the Canadian premiere of In My Hands: A Story of Marfan Syndrome on September 27, 2010 at St. Lawrence Hall in Toronto.
TICKETS ARE NOW ON SALE! CLICK HERE FOR MORE INFORMATION!
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This inspiring film brings together individuals and families affected by Marfan Syndrome to bring hope and build self-esteem to individuals that are different because of their physical attributes resulting from this disorder. In My Hands, is a demonstration of human resilience and can help us all in our own lives.
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We invite the entire community to take part in this special event that
is guaranteed to educate and inspire the audience about individuals
living with this serious genetic disorder. We encourage you to make a
difference in the lives of individuals affected by Marfan Syndrome
through our various fundraising initiatives!
Hosted in partnership with the Toronto Marfan & Connective
Tissue Disorder Clinics, SickKids Hospital and Toronto General Hospital.
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Revised Diagnostic Criteria for Marfan Syndrome Published in the Journal of Medical Genetics |
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In a new publication of the Journal of Medical Genetics, "The revised Ghent nosology for the Marfan syndrome," outlines important revisions to the diagnostic criteria for Marfan Syndrome. Click here for more information and to view the abstract. |
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Visit our fundraising page now to see how you can make a difference by holding your own event with family & friends, doing something you enjoy! No amount is too small! The summer is here and the time is now!
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The Marfan House Raises $20,000! |
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Julianne MacDonald and Dr. Gabrielle Horne accepting the donation on behalf of the CMA
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The RoofTight Team
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See presentation ceremony/press conference video above.
The Canadian Marfan Association is honoured to announce the sale of the first Marfan House.
After months of anticipation, the Marfan House closed on April 28th, 2010 and a donation was presented on April 26th at a press conference in Sackville, Nova Scotia. Dr. Gabrielle Horne, who sits on the Medical Advisory Board to the Canadian Marfan Association, generously accepted a cheque on behalf of the CMA in the amount of $20,000!
As highlighted in the last issue of Newslinks, The Marfan House project was spearheaded by Scott Smith, President of RoofTight Construction (www.rooftight.ca). RoofTight’s in house designer, Michelle Reid has a daughter with Marfan Syndrome. “Maybe we can help educate others about this little known disease and ultimately save a life,” said Smith. As, Mr. Smith intends on continuing this project on an annual basis, RoofTight Construction’s contributions play an influential role in assisting the Canadian Marfan Association to achieve it’s mission, to save lives and enable promising futures for those living with Marfan Syndrome by educating patients, families, and the health care community, creating a network of support, and supporting research. "What Scott did was wonderful and incredibly generous," said Julianne, Reid’s daughter; "It is very important to raise awareness for this disorder because, if not monitored by doctors it can be a silent killer."
The Canadian Marfan Association would like to greatly thank all the contributors from RoofTight Construction for their hard work, continued support, and believing in the Canadian Marfan Association!
Click below to view an article about the Marfan House highlighted in the Halifax News Net:
http://www.halifaxnewsnet.ca/index.cfm?sid=339008&sc=608
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