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TSC In the News
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-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:
Don’t miss out on TS Canada’s family day conference!
The clock is ticking!!
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 her “blood freckles”. People would ask her why she included that and she always responded stating it was one of the many things that maker her her. As we got older, I began to realize that just because this was a common and everyday thing for me and my family, didn’t mean it was for everyone else. I have seen my sister be asked by strangers about her skin (assuming it was acne), beauty-techs at the mall offering to clear up her skin, as well as her having to even educate a doctor on her disorder as they didn’t know what it was. I would love to live in a world where everyone knew about TSC as much as I have. At this point I can’t imagine my life without it or my sister.
My birthday is February 2nd. Facebook had an add saying something along the lines of “Your birthday is coming up, have you considered donating to charity?”. I thought about it and said absolutely! I knew exactly what I wanted to donate to and it was something dear to me that is also so obscure. I wanted people to know about this disorder and to support anyone out there living with TS.
Back in February, I entered my name into a draw to be granted $500 to donate to a charity of my choosing and I ended up being chosen. I didn’t even bat an eye as I knew where I wanted this money to go. I wanted it to help Canadians living with TSC and the TSC Canada helps raise awareness and support for those living with TSC. My family has been fortunate that we have been able to support my sister in any way possible but I know not everyone is as fortunate as we are.
I can’t wait to see what TSC Canada holds in store! Thank you so much for being the great organization you are.
-Riley
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.
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.
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
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!
