IPWSO President Tony Holland recently attended and spoke at the PWSA | USA National Convention in Florida, USA:
The PWSA | USA National Conventions are always special occasions, and I was delighted to be able to participate in their 2023 event.
PWSA | USA was one of the first National PWS Associations to be established and it was a founder member of IPWSO. Susie Cassidy and the late Pam Eisen, both from the US, are past Presidents of IPWSO. PWSA | USA holds their main conference every two years and this was the first one in-person since the pandemic.
The welcome in the US is always warm and the topics discussed very varied. One particular highlight was a special session with the Food and Drug Administration (FDA) which was devoted to families expressing their concern about the fact that the FDA had not approved any new treatments for PWS. I found myself slightly ambivalent about this session – the stories of apparent improvement on trial treatments were very moving but the question, which wasn’t addressed, was why the benefits described by families hadn’t been detected by the trials or at least not detected to a degree that, on the basis of the evidence provided at that time, satisfied the FDA? The argument put forward by families was that the risks that come with having PWS are such that we can accept some uncertainty as to the risks and benefits of treatment.
The issue of ‘trial endpoints’ was covered to some extent in another session where alternative perspectives were given by experts in the field. Several pharmaceutical companies gave updates on the progress they were making. There are several proposed treatments being considered, or close to being evaluated, each with different modes of action. This is very positive and there is a sense that there will be new treatments in time. Disordered sleep was another focus and there was a re-evaluation of carbotocin being proposed.
Treatment is of course more than just medication. Knowledge and understanding of the syndrome itself informs care and psychologically informed approaches, such as that of Applied Behavioural Analysis, remains a mainstay of support. There was also a strong presence from organisations providing support specifically to people with PWS.
In 2025, PWSA | USA celebrates its 50th anniversary and will be IPWSO’s partner for the next IPWSO international conference – hopefully there will be further advances to report by then and more information about treatments. Thank you to PWSA | USA for being great hosts once again and for all the work they put in to making their convention such a success.
The photo above is one of a series of pictures created by an artist throughout the convention capturing key moments and impressions of the event.