Our President’s Reflections
I am of an age and a generation where blogs and social media remain a bit of a mystery. I also remember a ‘pre-google era’ when the local library or the school library were the main sources of information – yes there was such a time! So much has changed and with the internet communication is now possible to almost all parts of the world in an instant and at low cost. For a small global charity such as IPWSO this has transformed what is possible. However, face-to-face meetings, socialising together, and group discussions and workshops still very much have their place. This was much in evidence at the IPWSO Professional Providers and Caregivers Conference held in Berlin in late May this year. So many ideas were shared, experiences exchanged, and observations from different countries discussed. It goes without saying how critically important informed and good support is for families and for people with PWS – this was an opportunity for those providing such support to step back and reflect on what they do and how they do it. The Professional Providers and Caregivers Board chaired by Lynn Garrick are to be congratulated on the conference and for the community spirit that was so evident.
This is my final year as President of IPWSO and in June 2025 I will hand over after nine years in the post. I shall undoubtedly miss it, but change is a good thing, and fresh ideas are to be welcomed. Attending the PPCB meeting was an occasion for reflecting on the wider work of IPWSO – the various committees, the volunteers, and the excellence of those who run the organisation – Marguerite and her team.
Under Marguerite’s leadership, we have made great progress. Marguerite has worked tirelessly to deliver the vision and embed our values in every aspect of our work, and she will be very much missed when she leaves us next year. We have made huge strides in many areas, however, there is much more to do.
Our recent strategy review has set out our priorities – whilst these are ambitious, I think we also feel that they are clearly constrained by our limited financial resources. We have over the years reflected on having a stronger regional presence with staff fluent in the relevant language; being able to more actively support parents, service providers and clinicians; having a research officer who can support the undertaking of research so as to help us understand global needs; and being able to extend the information we provide on PWS in different formats and in an increasing number of languages. We need to identify new ways of funding our work and ensuring it can be sustained over time and expanded to areas of the world where a child with PWS may not be identified and receive a diagnosis, and where support for parents is not available.
In a world that seems at the moment somewhat challenging this is, in contrast, a positive and exciting time for the ‘PWS world’ – our understanding of the syndrome continues to develop and new treatments for the hyperphagia and perhaps other behaviours are on the horizon. In June 2025 IPWSO, PWSA USA and FPWR come together under the banner of ‘United in Hope’ to jointly host the next international conference. As always there will be the different strands to the conference and something for everyone – don’t miss it!
There are lots of opportunities and challenges ahead of us. The signs of a good organisation are evidenced by its ability to adapt and change, and I am confident that IPWSO has firm foundations to enable it to do so.
