TSC In the News

December 1-7 is Infantile Spasms Awareness Week 2016 (ISAW)


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Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome – and that’s why we’re dedicated to raising awareness of this disease.

But awareness is just the first step – we also need more research. The first ever preventive epilepsy research project specific to infantile spasms in tuberous sclerosis complex (TSC) is beginning in the USA. Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, earlier intervention could prevent infantile spasms or other types of seizures. The study will recruit 80 infants with TSC (infantile spasms occur in an estimated 30% of children with TSC) at seven sites across the country.

Efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. The goal is to increase awareness and understanding of infantile spasms through education and research. The future is bright.

Please join us on social media using #ISAW2016 and visit www.isweek.org

A Successful Conference!


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TS Canada ST and BC Children’s Hospital were pleased to present the 2016 Vancouver TSC Educational Conference this past month where sessions were provided by both local and international experts on TSC.  A special thanks goes to Dr. Mary Connolly who was instrumental in making this conference happen as were all of our sponsors:

Title sponsor: Novartis

Silver sponsors: Eisai Limited and UCB Canada Inc.

Bronze sponsors: BC Epilepsy Society and Tuberous Sclerosis Alliance

Many of our sessions were recorded on video.  Browse through the conference videos here

We look forward to providing more of these important education meeting in the future!

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