Do you know about infantile spasms? The Epilepsy Research Program of the Ontario Brain Institute has created an education resource for parents and clinicians on infantile spasms. Please share the information sheets to help promote awareness and education for new parents and clinicians. Infantile Spasms Awareness fact sheet for new parents. For healthcare providers: Information about Infantile Spasms.
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go for care. Click here for information about the survey. tscalliance.org/clinicsurvey **Pour les familles/patients qui se rendent à la Clinique STB du CHU Sainte-Justine ou du CHUM, le sondage peut être complétée ici: tscalliance.org/sondage
May is TSC Awareness Month, and TS Canada ST is putting together an organizational plan for growing its services and volunteer base. We would like to hear from our TSC community about what resources, programs, and educational information to offer in the future. We are also updating our contact list. Please fill out this brief 5-minute survey and give us feedback on what would be most helpful to you and your family. https://survey.sogosurvey.com/r/JH3Zsf
Great things are coming for those affected by TAND! To know more about the TANDem Project, watch this video: Introduction to the TANDem project by Prof. Petrus de Vries and Prof. Anna Jansen
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…
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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/
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
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
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
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!