TSC Matters

Archive for April, 2023

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.

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

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...Read More

Transition Readiness Survey

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition to an adult model of health care. This study involves completion of an online survey and more information can be found below.Read More