TSC Matters

Archive for October, 2019

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.

SPARK for Autism Research Study, Boston Children’s Hospital

Boston Children’s Hospital would like to invite individuals of all ages diagnosed with autism as well as their family members to join SPARK!  SPARK, sponsored by the Simons Foundation Autism Research Initiative, has the mission of speeding up research and advancing understanding of autism by building the nation’s largest autism study.  Registration can be found online at  www.SPARKforAUTISM.org/BCH.   Individuals with autism will receive gift cards valued at up to a total of $50 for participation. By dramatically increasing the number of research participants, SPARK aims to help facilitate research that has not yet been possible. Questions? Contact Emily Matthews, Clinical Research Coordinator...Read More

45th Anniversary Flashback: The 2000s

Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary. This milestone is only possible due to the tenacity of untold numbers of tuberous sclerosis complex (TSC) community members, physicians, researchers, staff and board members, partner organizations and other supporters who help us work toward our mission to find a cure for TSC while improving the lives of those affected.Read More

Meet Team TSC

On Sunday, November 3, 2019, 11 members of Team TSC will be running in the 2019 TCS New York City Marathon on behalf of the TSC Alliance. To date, our Team TSC runners have raised over $50,000 this year to support TSC research and support services! Meet Team TSC and support their fundraisers today!Read More

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 experienced by adults with TSC. The questionnaire addresses medical conditions and the impact of TSC on quality of life. In this way, they will know more about issues that are important for adults with TSC and which issues require more attention and/or treatments. The questionnaire has to completed by the adult with TSC or a parent or other representative. It will take about 40 minutes in total and it consists...Read More

Baby Brain Imaging and Behavior Study (Baby BIBS)

Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC. The study is expected to help identify children who will benefit from intervention very early in development when treatment is known to have the greatest impact. Participating families will receive developmental feedback reports at 1, 2, and 3 years old, close developmental monitoring of their newborn, and free early intervention if there are signs of developmental delay. Learn MoreRead More

JASPER Early intervention for Tuberous Sclerosis

Additional Funding Available to Support Travel to Participate in an Early Intervention Study for Infants and Toddlers. Researchers at UCLA and Boston Children’s Hospital are conducting a clinical trial of early behavioral intervention in toddlers ages 12-36 months with TSC! Intervention is provided both in person and remotely through video conferencing. To learn more about the study, visit us at www.JETSstudy.org Download the study flyerRead More

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular models of LAM and angiomyolipomas to catalyze translational research. Please contact us if you are considering lung transplantation or any type of surgery. We are actively seeking tissue specimens from LAM, angiomyolipomas, lung transplantation, chylous fluid, uterine fibroids or tumors, or any other tissue or specimen from individuals with LAM or TSC.Read More

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 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months of enrollment or have had laser surgery within 6 months of enrollment are not eligible to participate. These locations in the United States are recruiting participants: University of California San Diego La Jolla, California, United States, 92037 Contact: Jessica Reit jreit@ucsd.edu Principal Investigator: Doris Trauner Spectrum Health Grand Rapids, Michigan, United States, 49503 Contact: Christopher L Russell  christopher.russell@spectrumhealth.org Principal Investigator: Steven DeRoos Mayo Clinic Rochester, Minnesota, United States, 55905 Contact: Katrina Pierce,...Read More

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 epilepsy surgery. You are eligible if you are the caregiver of a child <18 years of age with tuberous sclerosis and had at least one epilepsy surgery. If you would like to participate, click here. For general research questions, contact Brenda Porter, MD: brenda2@Stanford.edu. For participant’s rights questions, contact 1-866-680-2906.Read More