TSC Matters

Archive for the ‘Note from the President & CEO’ Topic

February Note from the President and CEO

      Following what was a truly inspiring 45th anniversary year, all of us at the Tuberous Sclerosis Alliance (TS Alliance) started this new year motivated to capture that momentum and channel it into propelling research forward and providing support and resources for individuals and families affected by tuberous sclerosis complex (TSC) around the world. Transitioning from 2019 and what was a year of celebration, I am excited to dub 2020 the “Year of Innovation.” Read More

December Note from the President & CEO

As I reflect on 2019 one theme that runs through most of what we accomplished is the incredible power of collaboration. I initially highlighted this idea in the very first edition of TSC Matters back in April, specifically focusing on how through collaboration we can more effectively accelerate research, provide resources to our constituents, and advocate on behalf of everyone with tuberous sclerosis complex (TSC).  This approach has continued to ring true the entire year. Read More

October Note from the President & CEO

On Thursday, October 3 the Tuberous Sclerosis Alliance celebrated our 45th Anniversary Gala at the Edison Ballroom in New York City. This magical evening brought together more than 500 people, including families and individuals affected by tuberous sclerosis complex (TSC) from across the country, past and present board members, leading TSC researchers and clinicians, many of our corporate partners and representatives from other patient advocacy nonprofits with whom we frequently collaborate to move research and community programs forward. Together with the overwhelming support of the TSC community and those in attendance we raised $1 million to support TSC research and... Read More

August Note from the President & CEO

From July 22-26 Tuberous Sclerosis 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 TS 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

June Note from the President & CEO

On May 15, the Tuberous Sclerosis Alliance joined TSC International (TSCi) to observe the seventh annual TSC Global Awareness Day, created to make sure that people worldwide were being diagnosed quickly with proper treatments and clinical care and to raise awareness and funds to propel research and spur more breakthroughs. Since then, the amount of awareness generated from this initiative has grown exponentially, and this year the 15 Facts were shared over 5,000 times reaching more than 300,000 people around the world. This is a testament to the incredible power of a galvanized global TSC community. Read More

April Note from the President & CEO

We’re so excited to bring you the first issue of TSC Matters, our new bimonthly e-newsletter! TSC Matters is one of our new digital initiatives aimed at providing resources to our community in varied ways, and part of our greater commitment to making sure that everyone affected by tuberous sclerosis complex (TSC) has access to the resources and support they need. Thank you for reading! Read More