TSC In the News
RESEARCH OPPORTUNITY FOR TUBEROUS SCLEROSIS PATIENTS AND CAREGIVERS
A major pharmaceutical manufacturer has commissioned market research to understand the unique experiences of TSC patients and their caregivers.
Your participation in this project will help to expand on new treatments, as well as enhance awareness and improve education about TSC.
Please click here for additional information.
Tuberous Sclerosis Canada Sclérose Tubéreuse and Tuberous Sclerosis Alliance Announce Formal Partnership
In celebration of TSC Global Awareness day, Tuberous Sclerosis Canada Sclérose Tubéreuse (TS Canada ST) and the Tuberous Sclerosis Alliance (TS Alliance) are proud to announce they have joined in a partnership that will enhance community support, clinical care and research efforts in North America.
For complete details see our official joint statement.
ANNOUNCING THE 2016 Vancouver TSC Educational Conference
September 17th, 2016 * Vancouver, BC.
TS Canada ST in partnership with the TSC Clinic at BC Children’s Hospital is pleased to announce the 2016 family education conference for those with Tuberous Sclerosis Complex (TSC), their families and their caregivers.
This one –day conference will feature leading researchers and clinicians specializing in TSC (both local and from abroad) with topics relating to the latest research, diagnosis and treatment of TSC in both pediatrics and adults. This conference will help you CONNECT with others, CONQUER the many challenges of TSC and CELEBRATE the hope of new treatments.
Plan now to join others affected by TSC along with leading TSC physicians and researchers. Additional information regarding the agenda, registration and hotel information will be released in the following month.
Here are just some of the topics to date with more to follow, so stay tuned and save your spot early!!
- Early diagnosis of TSC and the impact of genetics on diagnosis
- Diagnosis and best practice in the management of Epilepsy in TSC and potential for prevention of epilepsy
- The Neuropscychiatric problems in TSC: Diagnosis and Management
- Behaviour problems in children with TSC
- Management of Mood disorders in TSC in adults
- Skin problems in TSC
- Impact of mTOR inhibitors in the treatment of TSC/ new treatment for epilepsy
- Renal disease in TSC: Prevention of complications/treatment
- LAM disease in TSC
Pre-register now by emailing TSCconferenceVancouver@gmail.com
CALGARY WILD FOR A CURE!
TS Canada ST is pleased to announce that we are holding a “WILD FOR A CURE” zoo walk fundraiser and family event in Calgary.
Where: Calgary Zoo
When: May 15, 2015 @ 9:30am
Details: 1km or 5km Run/Walk. Following the run/walk, participants will enjoy a BBQ lunch at the Zoo and time to explore the Zoo for the remainder of the afternoon.
Register now for this event! Go to www.runningroom.com to register
See attached poster for more information.
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.
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.
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.
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.