Mencía de Lemus Belmonte is the mother of two children with Spinal Muscular Atrophy. Since her children’s diagnosis in 2010, Mencía de Lemus Belmonte has been involved in activities related to patient organisations both at the national and international levels.
She is the current President of the Board of Trustees of FundAME, therefore leading the organisation’s strategy to better achieve its main goal of bringing a therapy to SMA patients as soon as possible while ensuring their quality of life and best care in the meantime. She is also President of SMA Europe. For the past 8 years, she has taken part to different initiatives promoting the patients’ best interests such as ENMC workshops on standards of care or on clinical trials readiness, EMA workshops on SMA, national and international meetings, conferences and trainings.