June 2019 - TSC Alliance

Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program

What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program provides patients diagnosed with tuberous sclerosis complex (or under consideration for diagnosis) with

TSC Clinic Experience of Care Survey

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

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...

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 ...

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...

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

Enrollment goal might be reached by Sept 2019...

TSC Clinical Research Consortium Update

To initiate and implement clinical studies more quickly and effectively, researc...

45th Anniversary Flashback: The 1980s

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

Join Team TSC and Run the NYC Marathon!

Team TSC is a dedicated group of people running on behalf of the 50,000 people i...

June Volunteer Opportunities Available

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

Get Your Tickets Now to Our 45th Anniversary Celebration in NYC

On Thursday, October 3, 2019, the Tuberous Sclerosis Alliance (TS Allianc...

Upcoming Community Events

Upper Midwest Picnic (Minneapolis, MN) Sunday, June 23, 2019, 11 AM Contact: Al...

2019 Global TSC Awareness Day Celebration Held at Foothill Oaks Elementary School in Sacramento, CA

Jessica Hilderbrand, Resource Specialist, held an event to celebrate one of her ...

#March4TSCresearch Update

We are excited to report over a third of the Senate signed the FY20 Dear Colleag...

Subscribe to TSC Now

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

Join Us for an Upcoming TAND Webinar

TAND Webinar: Trauma 101 for Parents of Medically Complex Kids Presented by Caro...

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by ...

St. Louis Regional TSC & LAM Conference

The TSC Alliance and The LAM Foundation are co-hosting four more Regional T...

June Note from the President & CEO

On May 15, the TSC Alliance joined TSC International (TSCi) to observe the seven...