Events Calendar

Visit www.StepForwardtoCureTSC.org for a complete listing of upcoming walks.

April

04/20/2018 Free Webinar — TAND 101: Who Is At Risk and What You Need to Know Before Your Child’s IEP

Plan now to join us for this free, one-hour webinar.  To participate in this free webinar, go to zoom.us/j/633123882 or call 408-638-0968 and enter meeting ID 6331-2388-2

Tanjala Gipson, MD (Le Bonheur Children’s Hospital) will give a presentation about TSC-Associated Neuropsychiatric Disorders (TAND) in children with TSC and how to seek help. This session is designed to help parents in the United States prepare for Individualized Education Program (IEP) meetings. Dr. Gipson will cover TAND risk factors and evaluations, and what you should do if you have trouble getting services covered.

Dr. Gipson is a child neurologist and developmental disabilities specialist. She is currently based in Memphis, Tennessee, where she is the Director of the TSC-Associated Neuropsychiatric Disorders Clinic and the Neurodevelopmental Disabilities Clinic at Le Bonheur Children’s Hospital and Assistant Professor of Pediatrics at the University of Tennessee Health Science Center. While she was at the Kennedy Krieger Institute in Baltimore, Maryland, she founded that hospital’s TSC clinic and established an interdisciplinary model of care for children and adults with TAND. Dr. Gipson is also a member of the TS Alliance Professional Advisory Board.

04/25/2018 Free Webinar — SeizureTracker.com: Your Role in Supporting Research Toward Seizure Prediction and Improving Quality of Life

Plan now to join us for this free webinar.  To participate, simply go to zoom.us/j/557832783 or call 408-638-0968 and enter meeting ID 5578-3278-3.

Do you worry about when your next seizure will happen?

Robert Moss (SeizureTracker.com) will discuss the evolution of Seizure Tracker™ and highlight the TSC community’s role in advancing research. Using patient entered data, the Seizure Tracker has been leveraged in the epilepsy research community to explore seizure prediction and forecasting methods. He will also showcase the TSC community’s role in the growth of the Seizure Tracker system along with the impact it has on improving quality of life for people with epilepsy.

Robert is the Co-founder of SeizureTracker.com and a parent of a child with TSC and refractory epilepsy. Seizure Tracker is a web and mobile resource which allows patients and care providers to collect seizure, treatment and lifestyle data and share it with their doctors. Reports from SeizureTracker.com visualize whether and how epilepsy therapies have an impact on seizures. Since it was founded in 2007, Seizure Tracker has grown to be the largest collection of patient-reported seizure activity in the world.

May

05/05/2018 Calgary TSC Family Conference

Join TS Canada ST on May 5, from 10:00 am to 4:00 pm for a FREE Tuberous Sclerosis Complex (TSC) Conference at the Hotel Alma at the University of Calgary in Calgary, AB.  A pre-conference workshop on behavioral manifestations and guidelines, also known as TSC-Associated Neuropsychiatric Disorders (TAND), will take place beginning at 9:00 am for those who are interested. Register here.

To view a tentative schedule with invited speakers, click hereNote: Childcare will NOT be provided at the conference.

05/17/2018 Free Adults with TSC Informational Call: My TSC Journey by Makenzie Moore

Are you an independent or semi-independent adult with TSC? If so, please join us for this free informational call at 8 pm (Eastern), 7 pm (Central), 6 pm (Mountain), 5 pm (Pacific).  To participate, use the toll-free call-in number: 1-866-613-5223 then enter access code: 4334003#. Each call’s length is one hour.  If you have questions or would like to receive handouts (if available) before the call, contact Dena Hook at dhook@tsalliance.org or (800) 225-6872.

June

06/07/2018 Free Adults with TSC Informational Call: Open Forum

Are you an independent or semi-independent adult with TSC? If so, please join us for this free informational call at 8 pm (Eastern), 7 pm (Central), 6 pm (Mountain), 5 pm (Pacific).  To participate, use the toll-free call-in number: 1-866-613-5223 then enter access code: 4334003#. Each call’s length is one hour.  If you have questions or would like to receive handouts (if available) before the call, contact Dena Hook at dhook@tsalliance.org or (800) 225-6872.

July