Author Archive

TORONTO WILD FOR A CURE!

**REGISTRATION IS NOW CLOSED** TS Canada ST is pleased to announce that we are holding a “WILD FOR A CURE” zoo walk fundraiser and family event! Where: Toronto Zoo When: May 15, 2016 @ 9:45am (walk starts at 10:00am) Details: Following the walk, participants will enjoy a BBQ lunch at the Zoo Pavilion with up-close encounters, a scavenger hunt and time to explore the Zoo for the remainder of the afternoon. Please email tsczoowalk@gmail.com to register. TSC Zoo Walk Poster  

Tuberous Sclerosis Complex (TSC) Comprehensive Clinic and Research Initiative

The Hospital for Sick Children (SickKids) is delighted to announce the opening of the Comprehensive Tuberous Sclerosis Complex (TSC) Clinic this month. Please see the attached announcement for details regarding the clinic and referral process. Sick Kids TSC Clinic announcement

Blue Jays Day to benefit TS Canada ST – SOLD OUT

***SOLD OUT*** Join us Saturday April 9th for a Toronto Blue Jays game.  All ticket proceeds will benefit TS Canada ST. Tickets are $50.00 and there are limited tickets available. Please email info@maximumrecruitment.ca to get your ticket today! See the poster for more info:  Toronto Blue Jays Day to benefit TS Canada ST

Rare Disease Article

TS Canada ST Co-chair Cathy Evanochko is quoted in this article on the challenges of diagnosing a rare disorder: http://healthydebate.ca/2015/11/topic/rare-diseases-undiagnosed-national-strategy

Study Participants Needed

Tuberous Sclerosis Complex Autism Center of Excellence Network (TACERN) are currently seeking infants in Canada to participate in the study, “Early Biomarkers of Autism in Infants with Tuberous Sclerosis Complex (TSC)” Visit the NINDS Clinical Trials study page or the Tuberous Sclerosis Complex Autism Center of Excellence Network (TACERN) webpage for more information.    

New Therapies, New Hope Patient and Caregiver meeting – Slideshows

If you were not able to attend the New Therapies, New Hope Patient and Caregiver meeting in Toronto November 8th, 2015, you can still get information on what was presented.  Go to http://tscanada.ca/conference-videos-and-slideshows/ and view the slideshows from some of the presenters.

New Therapies, New Hope Patient and Caregiver meeting

Tuberous Sclerosis Canada is pleased to announce a New Therapies, New Hope Patient and Caregiver meeting. All families and caregivers are encourage to attend.  You will have the opportunity to hear Dr. Kapoor and Dr. Bartels speak on TSC related issues, along with others to be confirmed. Where: Pearson Hotel Conference Centre Toronto Airport.  240 Belfield Road, Toronto, Ontario. When: Sunday November 8th, 2015 Agenda: TBD RSVP is required to hold your spot.  Please RSVP to TSCanadaST@gmail.com New Therapies New Hope flyer

Mail out campaign

Tuberous Sclerosis Canada will be initiating a mail out campaign that will be taking place in the next few months. WE are looking for designs to be on the front of our cards that will be mailed out.  PLEASE send us your ARTWORK, we would like it to mean something to you, your favorite pet, activity, super hero. It can be whatever you wish.   Must be submitted by October 1st 2015. Please scan and send to tscanadast@gmail.com

50K Crowdfunded Research Challenge

Have a say in funding TSC research!  Tuberous Sclerosis Alliance has launched a 50K crowdfunded research challenge. Visit the #IAMTSC We are TSC 50K research challenge website to review and watch videos of the three research projects.  With each $100 gift, you’ll get to vote for one of three research projects that are being considered. Vote for your favourite! Voting runs September 1 through October 15, 2015.

PARTNERS (Patient Assisted Research Transforming National Effectiveness in Rare Diseases)

The Canadian Organization for Rare Disorders is pleased to “partner” with the PARTNERS initiative described in the attachments. The goal of the initiative is to engage with the rare disease patient community to design and develop new diagnostic and therapeutic interventions. To complete the survey online, go here:https://www.surveygizmo.com/s3/2118051/PARTNERS-poster If you would rather take part in the group interview, you can register for your local session here: http://partnersnetwork.eventbrite.ca PARTNERS Consultation Poster     PARTNERS Consultation Poster_FR