Mary Desmond Vasseghi, RGN, RM, BSc, MBA, is a PhD student, conducting research on Tuberous Sclerosis Complex (TSC), in the school of Medicine, Trinity College Dublin & FutureNeuro RCSI under the supervision of Prof Colin Doherty and Dr Miriam Galvin. Mary has worked as a patient advocate for 17 years and has held several appointments both nationally and internationally, following her son's death to Sudden Cardiac death and daughter's diagnosis of TSC.

TSC is a genetic disease, affecting 1:6,000, causes benign tumors to grow throughout the body and can cause serious health problems. The primary aim of the study is to build a body of data, to inform the development of an internationally recognised standard of care for patients with a diagnosis of TSC in The Republic of Ireland. Investigating the degree of alignment of people, processes, and technology will provide valuable information in achieving this goal.