TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.
February Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today.Read More
Tuberous Sclerosis Research Opportunity
Please help us better understand factors that impact the decision to undergo epilepsy surgery.Read More
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. Read More
Ongoing Early Intervention and Autism Trials
See below for ongoing trials.Read More
Ongoing Biosample Studies
See below for ongoing studies.Read More
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.Read More
Ongoing Epilepsy Trials
See below for ongoing trials.Read More
FDA Approves Sabril Label Expansion For Patients 2 To 10 Years Old
On January 24, the TSC Alliance learned the US Food and Drug Administration (FDA) formally approved Lundbeck Pharmaceutical’s label expansion for Sabril® (vigabatrin) to now be available to treat refractory complex partial seizures in patients 2 to 10 years old. Learn MoreRead More
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND), seizure control and more. Haven’t listened yet? Check out the latest episode. You can subscribe to TSC Now on Spotify, TuneIn, Stitcher, Apple Podcasts, Google Podcasts or wherever you listen to podcasts. Listen and SubscribeRead More
#March4TSCresearch Update
On March 4, 2020 more than 120 volunteer advocates from across the country will gather in Washington, DC for the annual March on Capitol Hill to advocate for continued funding of the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense. Want to get involved? Send us an email at grc@tscalliance.org to learn more.Read More