UK Patient Engagement Director

Melanie Battye - Patient Engagement Director - UK

Melanie Battye is the mum to Saskia who has a diagnosis of Syngap1. Saskia was one of three children diagnosed in 2012 from the DDD (Dysphering Developmental Delay) study in the UK. In 2012, Saskia was one of only 3 children in the UK and 16 in the world and was quite an isolating prospect. If you look at the Syngap1 journey over the last 7 years you can truly see how far as a community has come, and looking at that, you then ask yourself where will we be within the next 7 years? Melanie is excited to embark on this new journey and chapter of her life with BTG, helping represent the families of the UK, raising awareness by promoting Syngap1, raising the needed funds for the UK research teams and families, and also unite the families of Syngap1 with social activities so that it reduces their feelings of isolation.