Family weekends

When the charity was set up in 2017 our aim was to provide those living with PROS & families with the chance to get together to meet each other & build a community. As well as invite doctors & researchers along to share their knowledge & research on PROS with the families & patients alike.

In 2018 we held our first family weekend alongside the Proteus Syndrome Foundation, as at the time very little was known about PROS.

Since then we have held our first ever dedicated PROS family weekend in November 2023 at the Holiday Inn in Heathrow. Below you will find information on both those events.

During our 2023 family weekend, we were able to video the presentations & now have a dedicated You Tube channel where you can see these, a link is provided under every doctors talk or alternatively please use the link here: GoPI3Ks You Tube Channel

Our family weekend November 2023

Our first ever dedicated family weekend for those living with and affected by PROS.

This took place on Saturday 18th November & Sunday 19th November 2023 at the Holiday Inn, 276 Bath Road, West Drayton, UB7 0DQ: Hotel in West Drayton | Holiday Inn London – Heathrow Bath Road Hotel

The conference began at 10am on the Saturday and closed on Sunday midday following some attendees having one to one sessions with a doctor.

The day included talks by medical professionals and also from those within the PROS community.

It was a chance for adults living with PROS as well as children and their families to meet others in similar circumstances.

Mandy, Sue, Katie & Amanda (the GoPI3Ks team)

Our speakers & their presentation topics during the weekend were:

Professor Semple’s presentation: Prof Semple’s presentation

Dr Madsen’s presentation: Dr Madsen’s presentation

Doctor’s discussion panel: Discussion Panel You Tube video

Mental Health & Living with PROS: Zubyda’s You Tube presentation

The management of PROS: Prof Vabres’ You Tube presentation

The RDCN: Dr Polubothu’s You Tube presentation

Unfortunately we are unable to bring you this presentation currently

Mandy’s treatment update: Mandy’s You Tube presentation

Feedback from the attendees

This summary was written by Koen Nijbroek (one of the attendees) and is not scientifically verified.

It contains the highlights of the scientific parts of the weekends presentations and may contain personal views and interpretations.

GoPI3Ks Family Weekend scientific roundup

We would like to say a huge thank you to Koen for taking the time to do this for us.

Our family weekend 2018

On Saturday 27th of October we held our first GoPI3Ks family weekend along with the
Proteus Syndrome Foundation (PSF)

For many GoPI3Ks members, this would be the first time that many parents and
children alike would have met anyone with the same condition.

We are all very aware of how isolating it can feel to not have that psychological support or knowledge of what can happen to you or your child as they get older.

This weekend was the perfect opportunity for families & patients to get to know each
other & listen to each other experiences plus to also have the opportunity to listen to
the leading doctors in the field speak about recent research & possible treatments.