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.

Caregiver Experience Survey for Individuals with TSC

Global Perspectives, specialists in recruiting caregivers and patients for scientific studies, are currently looking for caregivers of individuals living with tuberous sclerosis complex (TSC). The purpose of this study is to understand caregivers’ experiences of the symptoms of tuberous sclerosis complex (TSC) and how TSC affects the everyday lives of the person they care for. The study does not involve taking treatments; they are only interested in opinions. For your participation in the study, you will receive $75 after completing the first survey and an additional $60 after completion of the second survey. Should you also complete an optional 60...Read More

Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?

Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures associated with TSC. Children older than 5 years, adolescents and adults up to 30 years of age may be able to participate in the study, if their seizures associated with TSC are not sufficiently controlled by their current treatment. The Galene study is currently open for enrollment in the US, Israel, Turkey and Australia. Further sites are opening in the UK, Spain, Italy, Poland and India. To learn more about basimglurant, check...Read More

TSC and Emotion Dysregulation Study for Children 8 to 18 years old and Their Caregivers

What A study to learn more about the effectiveness of a Tuberous Sclerosis Complex (TSC) treatment program called “Regulating Together.” This study will be primarily conducted remotely. There will be sessions to complete cognitive/behavioral testing, as well as five weeks of group session that will meet twice weekly for both children and parents/caregivers. This will last approximately 30 weeks from start to finish. (Please note that this is a research study and not treatment). Who Children 8 to 18 years old with TSC and emotion dysregulation One or two parents/caregivers who provide care to the participant Pay Participants will receive...Read More

We’re Hiring: Science Project Coordinator

The TSC Alliance seeks a Science Project Coordinator to monitor progress of multiple research collaborations, develop materials to communicate scientific concepts and impact, report on project outcomes, schedule and plan meetings with clear agendas and follow-up actions, and perform other project management-related functions.Read More

April 2023 Message from the CEO

TSC Alliance President & CEO Kari Luther Rosbeck announces registration opening for the 2023 Regional TSC & LAM Conference Series co-hosted with The LAM Foundation, encourages everyone to participate in a Step Forward to Cure TSC event near you, provides an update on the 22nd Annual Comedy for a Cure held on Sunday, April 2, 2023 and wishes April Cooper a happy retirement! Register for a Regional TSC & LAM Conference near you. Register today for a Step Forward to Cure TSC event near you or participate in our Virtual event in your own neighborhood. Subscribe to TSC Matters, our...Read More