TSC In the News

Attention: Adults with TSC or parent/caregiver of a dependent adult with TSC

Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC?
Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her research team have developed a questionnaire for adults with TSC, called the Checklist for Adults with TSC or CHAT-TSC. In this questionnaire, adults with TSC or caregivers can indicate all of the problems experienced living with TSC.
Dr. Eeghen and her team are seeking volunteers to help test this questionnaire.
If you want to participate in this research project please click on this link http://www.123formbuilder.com/form-4405144/contactformulier then enter your name and email address, then click the button “stuur het bericht” (Send the Message).
For more information or questions about the research you can contact the Erasmus Study Team at Chat.tsc@erasmusmc.nl

North American Virtual Epilepsy Meeting

The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) is hosting their North American Virtual Epilepsy Meeting September 25-27, 2020. Registration info will be coming soon!
For more information and to view the program, visit www.epilepsycongress.org/naec/

COVID-19 and TSC


Do you have questions regarding COVID-19 and TSC?  Here are some excellent resources:

COVID-19 Tips for ParentsCOVID-19 Conseils aux parents en situation de confinement


COVID-19-Considerations for TSC Medical Professionals

COVID-19 Mental health resources for adults and children, including those with intellectual disabilities

For more comprehensive and up to date Canadian information, please visit Government of Canada Coronavirus Disease (COVID-19) website

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

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!!

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!!


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.