TSC Matters

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

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

December Note from the CEO

      In the last edition of TSC Matters back in October, I reflected on all the ways the COVID-19 pandemic has challenged our organization to pivot and how you have been critical to our ability to continue the important work of the TSC Alliance.  This month, as the year comes to a close, I want to express my gratitude once again to the entire TSC community for helping to keep us afloat during a tumultuous year. Just last week we raised over $33,000 for #GivingTuesday, which is the latest testament to your incredible generosity. I would also like... 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

April Note from the President & CEO

      It is crazy to think that six short weeks ago we were wrapping up an emotional and productive March on Capitol Hill and Spring Board Meeting, which brought together our amazing volunteers and leaders from around the country for three full days of advocacy, strategic planning, and celebrating our community.  As part of those meetings we began developing protocols for COVID-19 and its impact on the TSC Alliance, but there was no way we could anticipate just how drastically this pandemic would affect our organization, our lives, and the world. Read More

February Note from the President and CEO

      Following what was a truly inspiring 45th anniversary year, all of us at the TSC 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 TSC 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 support... 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

June Note from the President & CEO

On May 15, the TSC 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