Ramblings of a CEO: MPS National Conference 2019

Well it has been just over a week since the 2019 MPS National Conference and as I sit here whilst on leave in Mallorca with my family I have had the chance to reflect on the weekend. I wanted the conference to be a more relaxed event focusing on families meeting up with old friends and meeting new lifelong friends. The whole weekend kicked off with introducing our community to the new MPS Society strategy, a plan that has been shaped by our community, followed by the MPS has talent show. What a way to start the weekend! Sophie Thomas as the MC along with the help of Maddie and such talent we have amongst our members. There were so many smiles and a few tears of pride, it was a joy to witness.

Saturday was all about the presentations designed to inform all in a way that is easy to understand. That was a real challenge for the professionals and I think they managed to deliver some excellent presentations, the feedback certainly shows this. But as always the most popular presentations were by the families themselves, full of personal experience and humour that we could all relate to in some way. On Saturday night we held the Gala Dinner which was a chance for me to introduce many of the MPS Team who work so hard on your behalf. Then a chance to have some fun and boogie the night away. Sunday was an altogether more relaxed morning focused around workshops and for me I had one of those light bulb moments in the dads and lads session. It is clear there is a real need for the men to get together and share experiences and maybe even come together to organise a fundraising event on behalf of the MPS Society.

All good things come to an end and all too soon conference was over. Time to say goodbye, exchange contact details and hit the road. I am so very proud of Sophie, Martine and Jackie and all those who helped to arrange the 2019 conference. Will there be another one in two years? That is up to our community to decide. So this is Bob signing off on the 2019 conference and doing what I hope you all get a chance to do, spend some quality time with family and friends.

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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