Tuberous Sclerosis Canada Sclérose Tubéreuse

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…

Read More »

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 Parents / COVID-19 Conseils aux parents en situation de confinement COVID-19-FAQ 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

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…

Read More »

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