The TSC Alliance is an internationally recognized non-profit organization that aims to improve the lives of people with tuberous sclerosis complex (TSC). TSC is a genetic disorder that causes tumours to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism.
TSC Alliance’s aims are to drive research, improve quality care and access, and advocate for all affected by the disease. The TSC Alliance collaborates with individuals and families, along with the partnership of other organizations, fuelling their work to ensure people navigating TSC have support. touchNEUROLOGY had the pleasure of speaking with Kari Luther Rosbeck, President & Chief Executive Officer of TSC Alliance, to discuss the organisations aims, objectives, and major challenges and opportunities for 2022 and 2023. She also discusses the organization’s initiatives that they have planned in the coming months and years.
Watch part 2 of the interview: TSC Alliance Events and medical research in 2022/23
Helpful resources:
Questions:
- Could you give us a brief overview of the TSC Alliance’s objectives? (0:11)
- What are your top priorities in your role as TSC Alliance’s president and CEO? (1:10)
- What will be TSC Alliance’s major challenges and opportunities in 2022/23? (2:21)
- What initiatives are planned in the coming months? (5:26)
Disclosures: Kari Rosenbeck has nothing to disclose in relation to this interview.
Support: Interview and filming supported by Touch Medical Media. Interview conducted by Katey Gabrysch.
