Tuberous Sclerosis Canada Sclérose Tubéreuse

COVID-19 and TSC: Webinars, Forums and Town Hall Meetings

The COVID-19 pandemic can be an especially challenging time for those affected by TSC.  The Tuberous Sclerosis Alliance (TS Alliance) is offering a number of webinars, open forums and virtual Town Hall meetings that will cover a wide range of TSC related issues during the COVID-19 pandemic. Click here to see a list of all upcoming webinars, forums and Town Hall meeting and here for past sessions.  Visit often as the list is updated regularly. We want to know, what topics would you like to see covered? Email us at TSCanadaST@gmail.com

COVID-19 and TSC

Do you have questions regarding COVID-19 and TSC?  The following resources prepared by the Tuberous Sclerosis Alliance addresses concerns from the TSC community and healthcare professionals: COVID-19-FAQ COVID-19-Considerations for TSC Medical Professionals For more comprehensive and up to date Canadian information, please visit Government of Canada Coronavirus Disease (COVID-19) website

A successful 1st Annual Tee Off for TS Charity Golf Tournament!!

Congratulations to the Chisholm family who organized the 1st Annual Tee Off for TS Charity Golf Tournament which took place this past summer in Sudbury Ontario.  The event raised almost $10,000.00 which will go towards research, awareness and education in support of those affected by TSC.  A great success for the TSC community!

The Stay Calm Project

The Stay Calm project is looking for parents and caregivers of individuals between the age of 6 years old to 25 years old, who have emotional outbursts at least once a month, to anonymously complete an online questionnaire. The questionnaire will contribute to the understanding of the cognitive and emotional underpinnings of emotional outbursts and be particularly useful when developing new treatment strategies. For more information and to complete the questionnaire, please visit the project webpage: https://www.katewoodcock.com/staycalm/

Don’t miss out on TS Canada’s family day conference!

The clock  is ticking!! Not much time left to register for the First ever TSC international research conference which is being hosted in Canada. (Toronto). This is an opportunity for the TSC community to hear world renowned clinicians speak at a TS Canada day conference which will coincide with the international research conference. https://web.cvent.com/event/fbb88af4-ae0e-4b21-8a3e-c552bf607b4c/websitePage:0ded1bbd-b101-4cef-9cdf-06c4f51fd4ee Register by June 1st TS Canada is also hosting a day trip to Niagara Falls from the conference hotel Sunday June 23rd. 10 spots left!! https://web.cvent.com/event/fbb88af4-ae0e-4b21-8a3e-c552bf607b4c/websitePage:3324d454-c64f-40f2-9483-c1ef87e1deaa

Rileys story!!

Riley Shortt has not only been raising awareness and taken on the cause to make people more aware about Tuberous Sclerosis Complex but she has found different ways to fundraise.  She took to social media and reached out to RBC bank for a grant. It all starts with my older sister. My whole life I just understood that this was a disorder that existed and someone close to me had it and I had never known a world without it. My sister and I always loved drawing and even as a little kid, when she would draw herself she incorporated…

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Tee off for Tuberous Sclerosis! May 30th 2019 – Sudbury

Money in Motion Presents:  Tee Off for Tuberous Sclerosis! Come show your support for Tuberous Sclerosis Canada by participating and/or sponsoring Northern Ontario’s first ever TS Charity Golf Tournament! When: Thursday May 30, 2019 Where: Timberwolf Golf Club, 1930 Maley Drive, Garson, ON View the flyer below for more information. Money in Motion Golf Tournament Flyer

Reminder -TS Canada ST Educational Meeting

REMINDER – Register  now for the opportunity to ask TSC related questions to world Renowned TSC Experts – (Limited space available) Saturday, June 22 2019.  Toronto. Click here to register  

Webinar: TSC related Angiomyolipoma – Management Strategies and Case Studies

Join Dr. Anil Kapoor on MAY 1, 2019 | 20:00 EST for a Webinar on TSC related Angiomyolipoma. Learning Objectives: By the end of this program, participants will: • Review TSC Disease and its manifestations • Learn how to recognize AMLs Associated with TSC • Review the Consensus Guidelines and Evidence Supporting the Guidelines • Discuss patient management options • Review two “real” life patient cases • Understand role of TSC CoE in Patient management and when to refer patients/families Click here to register May 1 TSC Webinar Flyer

TS Canada ST Educational Meeting – Toronto June 22nd, 2019

Registration is now open!! Join us for this one-day meeting on June 22nd, 2019 featuring leading international researchers and clinicians specializing in TSC to learn about the latest research updates, diagnosis and treatment of TSC in pediatrics and adults. For more information and to register for the Family Educational Meeting on Saturday June 22nd, 2019:   https://cvent.me/1qba9 For more information and to register for the Optional Niagara Falls Tour on Sunday, June 23, 2019:  https://cvent.me/Ww8MZ This meeting takes place in conjunction with the 2019 International TSC Research Conference: Changing the Course of TSC. We hope to see you there!