TSC Matters

Archive for April, 2021

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.

April 2021 Note from the President & CEO

TSC Alliance President and CEO Kari Luther Rosbeck provides organizational updates, including: How you can get involved in the upcoming Step Forward to Cure TSC Global Virtual Walk-Run-Ride. Information on a Virtual Town Hall about the COVID-19 Vaccine on Tuesday, April 20 at 6 pm Eastern co-hosted with The LAM Foundation. Her time as Chair of the American Thoracic Society Public Advisory Roundtable (ATS PAR) and an upcoming Meet-the-Experts Patient/Family Forum on Saturday, May 15. Subscribe to TSC Matters, a community e-newsletter from the TSC Alliance, so you never miss any updates!Read More

Congratulations to Our 2020 Volunteers of the Year!

On Friday, March 5 the TSC Alliance hosted our annual Volunteer Appreciating Celebration to pay tribute to the outstanding work of our incredible volunteers, who continue to work diligently around the year despite the challenges we all faced in 2020. This year, due to the ongoing COVID-19 pandemic the event was held virtually.Read More

April 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

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact 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