December 2019 - TSC Alliance

Are you an Adult with TSC or a Caregiver of an Adult with TSC?

Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (T...

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagno...

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are look...

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest an...

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular...

Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)

A new clinical trial for individuals with TSC and facial angiofibromas who are 6...

Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas

We are currently conducting a clinical trial for individuals diagnosed with TSC ...

Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery

We have a brief survey (20 minutes) addressing caregiver satisfaction with epile...

Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures

Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate th...

Engage Therapeutics Clinical Trial

Engage Therapeutics is a small biotech company working to improve life with epil...

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Progra...

Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)

Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston C...

45th Anniversary Flashback: The 2010s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary....

December Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act...

Submit your Nominations for our 2019 Volunteer Awards!

The TSC Alliance will honor up to four individuals, one Community Alliance and o...

We are Seeking Volunteers for the TSC Biosample Repository

The purpose of this research project is to collect a sample of blood, tissue, fl...

Important Information About Changes to Access and Availability of Generic Everolimus and Afinitor®

As of December 13, 2019, important information is available regarding changes to...

Upcoming Adult Topic Calls

Are you an independent or semi-independent adult with TSC? If so, please join us...

Upcoming Community Events

Chicago Post-Holiday Party Sunday, January 12, 2020, 5 to 7:30 pm Alexian Brothe...

Join Us for a Free Webinar on TSC-Associated Neuropsychiatric Disorders (TAND)

TAND Webinar: Effective Behavioral Treatments Presented by Dr. Nathan Call...

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/...

Listen and Subscribe to TSC Now

TSC Now is the TSC Alliance’s podcast series, which features interviews wit...

December Note from the President & CEO

As I reflect on 2019 one theme that runs through most of what we accomplished is...

Changes to TSC Matters in 2020

The TSC Alliance is transitioning to a new email platform in 2020. Be on the loo...