fbpx
SKIP TO MAIN CONTENT

TSC Matters

Archive for August, 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.

45th Anniversary Flashback: The 1990s

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

Upcoming Step Forward to Cure TSC Walks

Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC). Step Forward to Cure TSC® is the TSC Alliance’s largest national fundraising program, featuring a series of walks organized by local volunteers and families who are affected by TSC. Successfully launched in more than 30 communities across the United States, this grassroots effort not only generates vital funds for TSC research and support programs but also raises awareness about this disorder.Read More

August Note from the President & CEO

From July 22-26 TSC Alliance staff members from across the country came together at our headquarters in Silver Spring, Maryland for our annual Staff Planning Meetings. These meetings are incredibly important and vital as they allow the TSC Alliance team to pause from their day-to-day responsibilities and work together to prioritize the best ways to move forward our mission to find a cure for tuberous sclerosis complex (TSC) and improve the lives of those affected both next year and into the future.Read More

August Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.”  – Oscar Wilde The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today. They have propelled our organization to levels once thought impossible — from the original four volunteer mothers who started the organization in 1974 to nearly 3,000...Read More

Phenotypic Variability in Tuberous Sclerosis Complex (TSC)

Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC.  For this study, we are recruiting families with children of all ages in which a parent and child both have TSC.  In particular, we are looking for those families where the parent has little or no neurological problems (mild disease) and the child has severe neurological disease (severity assessed by scoring epilepsy and cognitive symptoms). 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.Read More

JASPER Early intervention for Tuberous Sclerosis (Valid through September 2021) – Modified to Include Video-Based Intervention

Researchers from Boston and Los Angeles are studying the benefits of early behavioral intervention in infants and toddlers with TSC. Intervention is provided in person and now remotely via video conferencing. This study design allows us to include families from all over the country. Where: Assessments will take place at UCLA and Boston Children’s Hospital. 4 intervention sessions will take place at the study sites, the rest will occur in your home, through video conferencing. Principal Investigators: This NIH funded study is led by Shafali Jeste, MD. (UCLA), Connie Kasari, Ph.D. (UCLA), Charles A. Nelson, Ph.D. (Boston Children’s Hospital) and...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.  For more information go to ClinicalTrial.gov.Read More

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 with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug, sirolimus, improves cutaneous angiofibromas in individuals diagnosed with TSC. The trial is sponsored by a pharmaceutical company named Aucta Pharmaceuticals, Inc, and it will involve 6 to 8 centers including Boston Children’s Hospital, Children’s Hospital of Philadelphia, Le Bonheur Children’s Hospital, Children’s Hospital Colorado, Children’s Hospital Los Angeles, and Translational Genomic Research Institute.Read More