TSC Matters

Archive for October, 2020

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

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

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