On Saturday 20th May 2017 we had the PMSF UK & Ireland Family Day at Wyre Forest School in Kidderminster, near Birmingham, UK. 300 people attended with 52 families affected by Phelan-McDermid Syndrome from the UK, Ireland, France and the US.
There were many activities for kids throughout the day. Music therapy, animals, sensory rooms, sports activities all catering to the needs of PMS families.
Dr Katy Phelan PMSF founder and Sue Lomas PMSF president attended from the US. There was a lot of discussion about raising awareness of the syndrome, the importance of documenting natural history of those with PMS, the differences with larger and smaller chromosome deletions and the changes and medical issues that families must address as their children get older. Dr Eva Loth and Dr Anna Riddell held a medical session and Sue Stokes ran a behavioural clinic all benefitting families dealing with this rare genetic condition.
One of the best things about the day is families meeting families who know exactly what they are dealing with and share in the challenges of coping with this rare disease. Immediately there is a strong bond, as you understand each other’s lives so well. Sharing the triumphs of our children and understanding the progress they make may look small but for the families involved they are huge. Spending time with people that understand that is so important and that friendship gives you the strength to carry on when your family is struggling with managing the condition.
We will have local family days in 2018 and information will be available on the website later in 2017. In May 2019 we will have another PMSF UK & Ireland Family Day, details not yet available.