IPWSO Chief Executive Officer, Marguerite Hughes, reflects on IPWSO’s 30th Year and our future plans. 

The new year is both cause for reflection and a time for finalising plans for the future. We do both in the shadow of COVID and in a spirit of solidarity towards those who have suffered because of it.

The highlight of 2021 for IPWSO was its 30th Anniversary Workshop, generously sponsored by Novo Nordisk, and hosted online in August. 116 delegates attended from 39 countries with the objective of helping IPWSO plan for the next 30 years.

We were inspired by the expertise, dedication and ambition of the global PWS community and encouraged by the sense of positivity so clearly on display.

We were struck by delegates’ appreciation for the pioneers who have been involved in IPWSO since the beginning and were delighted to present films from the wonderful Jean Phillips-Martinsson and Suzanne Cassidy in advance of the event.

Other films recorded by people with PWS, their families, professional caregivers, clinicians and companies seeking to develop new treatments for PWS reminded us of both the needs and the many reasons for hope within our community. 

The discussions by workshop participants left us in no doubt about the extent of work that needs to be done if substantial progress is to be made towards IPWSO’s vision of a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. 

For a brief summary, you can watch Tony Holland and Shelly Cordner discussing conclusions from the workshop in a short film.

While resource constraints mean that not all recommendations can be acted on immediately, IPWSO has already started work on some.  This work will continue and be expanded in 2022.

Several delegates recommended that IPWSO strengthen its links in areas of unmet need with a view to providing targeted supports to those areas.  To do so we must learn more about how people with PWS and their families live in some parts of the world.  In late 2021 IPWSO held an initial meeting with families and professionals from 6 African countries.  We hope to do the same in other parts of the world in 2022 and to work with local leaders to better support people in areas of unmet need.

Feedback from the workshop showed that people value an opportunity to discuss issues of common concern in an international and multidisciplinary setting.  In response, IPWSO is planning a series of “Summit Meetings” on topics on broad interest to the global PWS community.  More information will be made available on our website and social media channels in early 2022.

A need to provide more support to emerging associations and networks was also highlighted.  While IPWSO’s current Leadership ECHO will conclude in February, we will continue to work on an individual basis with emerging associations and link them with families and professionals around the world to help them achieve their aims.  We will also make further efforts to ensure that all groups are aware of IPWSO’s existing supports, including free diagnostic testing and grants to host PWS conferences and workshops.

Encouraging and enabling people with PWS to play a meaningful role in IPWSO and in national PWS associations was also discussed.  We look forward, as a first step, to holding a program for adults with PWS at our international conference in 2022.    

By continuing to work collaboratively and with determination as a global PWS community we hope that IPWSO’s 60th Anniversary will celebrate a world where people with PWS, wherever they live, can be expected to fulfil their potential and achieve their goals.

Marguerite Hughes – January 2022