TSC In the News

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.
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!!

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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

Webinar: TSC related Angiomyolipoma – Management Strategies and Case Studies

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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

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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!

Comedy Night in Ottawa

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Join TS Canada ST in a comedy night FUNdraiser on May 11th, 2019.  We promise there will be lots of laughs, chances of winning a 50/50 draw and a silent auction!

Tickets are $20 and can be purchased by emailing: mcote430@gmail.com or jflinn@outlook.com

See the comedy night flyer for more details.

We hope to see you there!

TSC Clinic Survey

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We are looking for feedback on the Canadian TSC clinics that have been approved by the TS Alliance.

This survey is for patients and families of the both Toronto SickKids TSC clinic and Montreal TSC clinic Only. We hope you will take the time to fill
it out.

https://www.surveymonkey.com/r/TSCclinicsurvey

TSC Education and Gathering Event – Calgary

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Alberta Children’s Hospital is holding a Tuberous Sclerosis education and gathering event.

When: Friday, January 11, 2019

Where: 4th floor auditorium, Alberta Children’s Hospital

Time: 10:15 am to 5:00 pm

Please see the event poster for additional information.  We hope to see you there!

You must register by November 30th, 2018 by calling Barbara Fox at 403-955-7469

Event poster

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