My name is Sandra Silva Arrieta and I was born in Lima, Peru. I did all my higher education near Boston MA, USA, where I lived for 17 years. I am the mother of two beautiful girls, and together with my husband, we have made Barcelona (Spain) our new home. Our younger daughter was diagnosed, at age 6, with a point mutation in the GRIN2B gene and since then we have not stopped searching for ways of helping her, and other GRIN families, to better understand and improve the quality of life of GRIN affected kids. After her diagnosis, we were very much blessed that a great team of researchers and doctors got interested in our daughter’s case and started searching for ways to help her and other GRIN kids. Thanks to their great work, the first Clinical Trial for GRIN children was started in 2020 in Spain.
I am currently part of the board of two GRIN associations, GRIN Europe and the Spanish GRINpatias Association, whose goals are: to help families with children affected by GRIN-related disorders, to fundraise allowing researchers to continuing their work on GRIN here in Europe, to empower parents by providing them information about GRIN disorders and to facilitating access to appropriate medical care for GRIN kids. I am also involved with the GRIN group of Latin American families, where I share information and help connect families, doctors and specialists from different countries with the Spanish research group (Barcelona GRIN team).
What I most love about this work is to know that families no longer feel alone in this remarkable, yet scary trip that lies ahead of us, when it comes to caring for our GRIN children. I truly believe knowledge is power and that families hold the greatest wisdom about GRIN disorders.