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TSC In the News
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
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
Rare Disease Stategy Possible in Canada
For more information please visit the links below.
Press Conference Video: youtu.be/Lta3kLNOesw?a
Global and Mail article: http://www.theglobeandmail.
Help support this endeavor and sign the petition: http://ow.ly/NosTk
Let’s Raise Awareness On Tuberous Sclerosis Complex (TSC).
National Post, Rare Disease Supplement. March 28, 2015 View…
Annual General Meeting
Tuberous Sclerosis Canada Sclérose Tubéreuse elected the Board of Directors and Executive committee at the Annual General Meeting on March 10, 2015. Election results are as follows:
4-year term
- Cathy Evanochko, Co-Chair
- Melissa Cote
2-year term
- Karen Shulist, Co-Chair
- Ray Marco, Secretary
- Jennifer Flinn, Director
We would like to thank Patricia Nolan for her years of dedication as a director with TSCST, we wish her nothing but the best moving forward.
