Archive for the ‘Uncategorized’ Category

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

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.com/life/health-and-fitness/health/group-releases-strategy-to-help-canadians-with-rare-diseases-get-care/article24586987/ 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.

TSC Patient meeting with Dr. Anil Kapoor, Hamilton

Dr. Anil Kapoor, Director of the Hamilton/Niagara TSC Program and Professor of Surgery (Urology) at McMaster University is hosting a TSC Patient meeting. All families and caregivers are encouraged to attend. You will have the opportunity to hear Dr. Kapoor speak on TSC related issues and to meet and network with others. Date/Time: TBD.  Meeting to be rescheduled Location:  Juravinski Cancer Centre Lecture Theatre,  4th Floor Juravinski Cancer Centre at Hamilton Health Sciences building,  699 Concession Street Hamilton, Ontario

TAND (TSC Associated Neuropsychiatric Disorders)

TSC is associated with a wide range of cognitive, behavioral and psychiatric manifestations which can be quite concerning to individuals and their families.  TAND (TSC Associated Neuropsychiatric Disorders) is a new terminology to describe these manifestations.  An introduction to TSC associated neuropsychiatric disorders (TAND) and the TAND checklist are now available online! Access and download the document here: TAND checklist

May is TSC Awareness Month

The month of May is Tuberous Sclerosis Complex (TSC) awareness month in Canada, and May 15th is TSC Global Awareness Day.  During this time, the goal is to increase public awareness about this genetic disorder that causes tumours. Please help to raise awareness alongside us.