Interviews with Special Olympics athlete Steven Striegel, who has tuberous sclerosis complex, and his family.

Leigh Horne Mebel, MSW, LICSW, BCD, ACSW
Managing Anxiety in Tuberous Sclerosis Complex

Leigh is a licensed independent clinical social worker and is affiliated with Massachusetts General Hospital. Some of what she can offer to families include helping people become more self-aware, helping people cope and manage challenges, and providing resources for an individual or their family. Some concerns people often bring to her are coping with anxiety and depression, concerns about relationships, or concerns about decision making. Leigh’s favorite part of her day to day is having the opportunity to talk with patients about their lives and learning how she can support them, helping them identify their strengths and building those strengths, and helping them become their best selves. Leigh has been working with people with TSC for ~18 years. She loves helping patients with TSC to understand their needs, to set goals, and work towards those goals. Leigh’s goals for the upcoming year include continuing the TSC adult support group and starting the TSC young adult support group.

TSC Center of Excellence Co-Directors Dr. James Wheless and Dr. John Bissler discuss questions and common misconceptions about TSC patients and the COVID-19 vaccine

Xandra Breakefield, PhD, is a research scientist at Mass General Hospital. What first started as identifying disease genes progressed to gene replacement therapy and then applying gene therapy skills on tuberous sclerosis complex (TSC) patients by Elizabeth Thiele, MD, PhD. Dr. Breakefield plays a huge role with the Herscot Center as she researches to hopefully find a cure for TSC patients. Dr. Breakefield has been doing scientific research for 40+ years. Dr. Breakefield and Edwina Abou Haidar, MD, will also highlight their early studies in gene therapy for tuberous sclerosis complex.

Elizabeth Thiele, MD, PhD, pediatric neurologist/epileptologist, discusses the impact TSC has on children.

The story of Alex's life with tuberous sclerosis complex (TSC) as told by his mother, Fiona.
"It was very overwhelming getting the diagnosis when all we really wanted to to do was celebrate bringing home our new baby".