Family Days

Upcoming PMSF UK & Ireland Family Day in 2023!

The next PMSF UK & Ireland Family Day will be held in Bolton, Greater Manchester in 2023.

We hope to be able to host some regional UK & Ireland Family Days before our next big Family Day in 2023. Please look at our upcoming events to see if there are any meet ups scheduled near you.

May 2019 Family Day

On Saturday 19th May 2019, PMSF UK hosted the Region 6 (UK & Ireland) Family Day in North London at Brookfield Primary School.

300 people attended, with 62 families affected by Phelan-McDermid Syndrome from the UK, Ireland, Greece and the US. There were 58 people with PMS at the Family Day ranging in ages from 2 years old to 33 years old. 15 families that attended had never met another child with Phelan McDermid-Syndrome (PMS).

Dr Katy Phelan and Sue Lomas, both PMSF founders, attended from the US and gave a brief history of PMSF and answered many questions about the syndrome and potential medical issues.

Dr Eva Loth and her team were on hand to discuss the Synaptic Gene Study (SynaG) that is part of the EU-AIMS project and meet more families. Speakers also included Rachel Gibson from CONTACT - an organisation that provides support to disabled families in the UK. Laura Guest a behaviour specialist and Jude Donoghue a communication specialist also attended.

There were lots of activities for the children to part in, including t-shirt painting, arts & crafts, football coaching and some creepy reptiles, including a large snake and a tortoise that walked all around the junior playground!

One of the best things about the day was families meeting other 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 is so important and these friendships give you strength when your family is struggling with managing the condition.

If you would like to organise a regional meet up with other Phelan-McDermid Syndrome (PMS) families local to you, please contact your regional rep.