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TSC Matters

Archive for February, 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.

TSC MRI Study

Why are we doing this study? Researchers at Johns Hopkins are seeking participants for an MRI research study where information will be collected to develop a new non-invasive imaging technique that will help us understand the biochemical factors affecting seizure activity and cognition in TSC. What: MRI scan to take pictures of your brain (approximately 60 minutes). For participants with TSC, a separate session of up to 2 hours for a neuropsychological test. Who can join? You are eligible if: You are a healthy volunteer You are a patient with TSC You are between the ages 6-30 years old Compensation:...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. If you are a parent/caregiver of or an adolescent between 14 and 22 years old with tuberous sclerosis or another genetic chronic skin condition, please consider participating in our survey study on transition readiness. The survey is for the adolescent to take themselves. A parent/caregiver can help the...Read More

Alzheimer’s in TSC Study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed TSC patients to live well beyond the age of 50. Subsequently, many TSC patients note brain function changes such as memory difficulties or problems learning new computer programs beginning in their mid-to-late 40’s. A research group at Duke University began characterizing these brain function changes in 2018. They believe that these changes may represent the early stages of a neurodegenerative condition. These researchers are conducting a 2-year study called “Tuberous...Read More

Baby Talk in TSC

Why are we doing this study? Our team is investigating how TSC impacts a baby’s speech. The study is focused on examining the vocalizations and early language of infants with TSC. What: In this study, we will obtain and analyze recordings of your child’s babbling and speech. The majority of the recordings will be obtained in your home using a small recorder placed in your child’s clothing (home recordings). In some cases, recordings will be obtained in an office/laboratory setting either at the University of Memphis or at Le Bonheur Children’s Hospital. We will also give speech and language tests,...Read More

Watch the 2022 World TSC Conference Videos

All 2022 World TSC Conference videos are now available. By accessing these videos, you can learn more about clinical consensus guidelines on surveillance and treatment of TSC, research updates, caregiver resources and more! Watch recordings of the general sessions, large lectures, panel presentations and specialty topic sessions now at tscalliance.org/2022conferencevideos.  Read More

We Need Your Input!

In 2023, the TSC Alliance will update our five-year strategic plan, so we are launching a comprehensive online Constituent Survey to assess what the organization is doing right, identify those things we can do better and lay the groundwork to ensure our planning efforts are on the right track.Read More

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