TSC In the News

The Stay Calm Project


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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!


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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.
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!!

Rileys story!!


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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

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Events Calendar

28febAll DayRare Disease Day

15mayAll DayTSC Global Awareness Day

01junAll DayWorldwide LAM Awareness Day

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