Families had the opportunity to meet other families affected by SYNGAP1, together with PWC and SIDB researchers working in the SYNGAP1 field. There were discussions on living with affected individuals, developing new strategies and gaining valuable information and support about SYNGAP1.
Throughout the day, there were talks from Lynne Thomson (Behaviour Management Co-ordinator) and Lizzie Ryan (Family Liaison), discussing how to take a person-centred approach to support individuals. We also heard from Allan Blake (Syngap1 parent), highlighting the importance of hospital passports and how to put into practice. Researchers Sally Till (Lecturer in Biomedical Sciences) gave a talk on lab science studies in SYNGAP1, together with Lindsay Mizen (Senior Clinical Research Fellow & Consultant Psychiatrist) who discussed the results from her recent ‘EVOSIS’ sleep study in Syngap1.
Sydni Weissgold (PhD student in Psychiatry (partly funded by SYNGAP1-UK)) also spoke about her new ‘CHANGES’ behaviour study. This CHANGES study will look at how behaviour might change over time in people with SYNGAP1, especially anxiety and agitated behaviours, as well as identify some of the potential biological associations of these behaviours (further details below).
It was a fantastic day where families and researchers were able to hear from different perspectives, all with a common goal to move towards a better understanding of SYNGAP1.
If you would like to take part in the CHANGES study, please email Sydni Weissgold at S.A.Weissgold@sms.ed.ac.uk.