‘OWL’ members, Sarah and Gurveer enjoy presenting at the PWSA UK Conference

October 18, 2018

On Sunday 14th October, Sarah of Parvale House and Gurveer of Heatherington House attended the PWSA conference in Derby; a two-day event that brings together parents, carers, professionals and children and adults with Prader-Willi Syndrome (PWS) to socialise, share experiences and listen to leading PWS experts as they share their specialist knowledge and advice.

On arrival at the conference both Sarah and Gurveer were pleased to see so many familiar faces, some of whom they had not seen for many years and spent time throughout the day catching up on all the news from their friends from other services. They also took part in a number of different activities throughout the day, including drumming and badge making. Sarah particularly enjoyed having her nails painted in the pamper room, with Team Co-ordinator, Stace however, they couldn’t convince Gurveer to have his nails done and instead he settled for a nice hand massage.

While Sarah and Gurveer were pleased to get involved in the social aspects of the conference, they also had an important job to do while they were there. Sarah and Gurveer are both members of the PWSA OWL (Our Way of Life) Focus Group, a focus group for adults with PWS, that provides a platform for them to discuss real issues that they face as well as enabling them to have a direct input on the running of the PWSA organisation.  The group were invited to deliver a presentation to attendees at the end of the conference so in preparation, Sarah and Gurveer attended a meeting with other members of the group for a final run through.

At 4pm, Sarah, Gurveer and the other members of the focus group made their way down to the main conference hall to deliver their presentation to a packed audience of parents, support staff and professionals. Each member of the group introduced themselves and provided a bit of background about where they live. They then shared with the audience how the focus group was formed and some of the things they do within it, including how they recently assisted with a ‘living with PWS’ survey and the creation of an educational video which was launched at the conference.

Despite their nerves Sarah and Gurveer delivered their presentation extremely well. Team Leader, Stace of Parvale House, who attended the event with Sarah and Gurveer was immensely proud of how well they both spoke, especially as it was Gurveer’s first meeting and he wasn’t sure what to expect.

The day ended with lots of hugs and swapping numbers and addresses so that they could keep in contact with some of the newer members of the focus group with whom they are now firm friends.

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