Finding a cure for tuberous sclerosis complex

TORONTO, May 15, 2014 /CNW/ - The month of May is tuberous sclerosis complex (TSC) awareness month in Canada, and May 15th is TSC Global Awareness Day.  During this time, the goal is to increase public awareness about this genetic disorder that causes tumours to form in vital organs, primarily in the brain, eyes, heart, kidneys, skin and lungs.  It is also the leading genetic cause of both autism and epilepsy.  1 in 6000 children are born with TSC. Early detection and treatment is key to improving outcomes for patients.

Although research continues, individuals living with TSC do have a glimmer of hope to make their lives better, with a drug called Afinitor. Health Canada approved Afinitor in 2013 to treat kidney tumours caused by TSC called angiomyolipomas (AMLs), however individuals who need this drug continue to wait for approval from the provinces. Let's work together at getting this drug approved for individuals who truly need it.

Please help to raise awareness alongside us. Many great Canadian landmarks have joined our "light it up blue for TSC" campaign in support of all those living with tuberous sclerosis complex around the world. Neighbourhoods across Canada, along with the CN Tower, Toronto City Hall, Niagara Falls, Skylon Tower, and the Langevin Bridge in Calgary will all be glowing beautiful blue on May 15th to mark the third annual TSC Global Awareness Day.

For more information, visit www.tscanada.ca

SOURCE: Tuberous Sclerosis Canada

For further information:

CONTACTS:  

Co-Chair
Karen Shulist
(905) 426-6219
kshulist@sympatico.ca

Co-Chair
Cathy Evanochko
(403) 681-2432
clevanochko@shaw.ca

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Tuberous Sclerosis Canada

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