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.
Global clinical study evaluating topical rapamycin treatment for facial angiofibroma in patients with tuberous sclerosis complex
This study of a new cream for the treatment of mild to moderate facial angiofibromas is underway in the United States and across the globe. It is anticipated that approximately 120 patients, aged 6-65, will participate in this trial over the next several months. Participation in the study will last roughly 8 months, including screening and follow up periods. If you qualify for the study, you will be responsible for daily application of the cream and completing a diary. For additional information on this study, including contact information on all participating study sites and detailed eligibility criteria, please visit clinicaltrials.gov...Read More
Join Us For the Final Virtual TSC & LAM Conference on November 7!
The third and final Virtual TSC and LAM Conference on Saturday, November 7, 2020. Register now! Did you miss either of the first two virtual conferences? Catch up on all the previous sessions! Finally, be sure to check out the Virtual Exhibit Hall for great resources from our sponsors. Learn MoreRead More
Participate in a Worldwide Survey on Access to TSC Medications
Tuberous Sclerosis Complex International (TSCi) invites you to participate in a brief worldwide survey about accessing medications for tuberous sclerosis complex (TSC). The survey will take 5-10 minutes to complete. It is anonymous, your answers will not be linked to any information that can identify you.Read More
October Note from the CEO
This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and to provide support in new and different ways to those affected by TSC. Of course, no pandemic can stop the challenges people with tuberous sclerosis complex and their families and loved ones face on a daily basis. COVID-19 also can’t stand in the way of the critically important work of the TSC Alliance. We remain committed to ensuring TSC research continues and to making sure our organization provides top-notch support...Read More
Participate in the TSC Biosample Repository Project
To better understand why people are impacted so differently by this disorder and with the aim to eventually be able to better predict its course, our organization invested in a TSC Biosample Repository and Natural History Database. This video demonstrates how we collaborate with TSC individuals and families as well as partners like Seizure Tracker and how other advocacy groups might also consider collecting data in innovative ways. LEARN MORERead More
Ongoing Early Intervention and Autism Trials
See below for ongoing trials.Read More
Ongoing Biosample Studies
See below for ongoing studies.Read More
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity.Read More
October 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.Read More
Ongoing Genetic Study
See below for the ongoing study.Read More