Jean and her son, Anders.
We remember and celebrate the life and legacy of Jean Phillips-Martinsson, founder and Honorary President of IPWSO, whose vision, determination and compassion helped unite the global PWS community and create a lasting source of support for people with PWS and their families around the world. Jean’s impact on the PWS community is reflected in the many heartfelt messages shared in her memory and a Guardian article, honouring her life and achievements.
On Tuesday 20 October, IPWSO President Nick Finer, President Emeritus Tony Holland and IPWSO advisor Colin Pearson attended Jean’s memorial to pay tribute to her life and the extraordinary contribution she made to the PWS community. It was an opportunity to remember a remarkable woman whose legacy continues to connect and support people with PWS and their families around the world.
Jean’s ‘IPWSO story’, and the work she devoted so much of her life to, began with her son, Anders, who was born in 1984 with PWS. It took 14 years for Anders to receive a formal diagnosis. During that time, Jean and her husband, Sven, experienced the uncertainty and emotional toll of trying to understand their son’s needs without having the answers they sought. Jean described this period as “being in limbo”.
This experience profoundly shaped her subsequent life’s work. Determined that other families should not have to face the same uncertainty and isolation, Jean became a passionate advocate for people with PWS and their families. In 1986, she co-founded the Swedish Prader-Willi Association, helping to build a community of support for families in Sweden. However, Jean’s vision extended far beyond national borders.
A vision that brought the world together
In 1991, Jean with support from others established IPWSO at the first international PWS conference in the Netherlands, bringing together emerging national PWS associations, clinicians, educators and other professionals with a shared commitment to improving the lives of people with PWS globally.
She served as IPWSO’s first President from 1991 to 1998 and remained an inspiration and guiding force behind the organisation for many years. With her characteristic passion and determination, Jean helped secure funding, encouraged countries to establish their own national associations, and supported the development of an international network where knowledge, experience and support could be shared across borders.
Jean speaking at the International PWS conference in Limerick, Ireland, in 2022.
Jean also helped establish a tradition of international meetings, hosted by national associations around the world, creating opportunities for families and professionals to learn from one another and strengthen their connections.
Today, IPWSO continues to work towards a world in which people with PWS and their families can access the knowledge, support and care they need, wherever they live. That global community owes so much to Jean’s vision and the foundations she worked tirelessly to build.
A deeply personal commitment
Jean’s work was rooted in her love for Anders and her understanding of the challenges families can face when a rare condition is poorly understood.
Anders himself challenged expectations about what people with PWS could achieve. When he moved to the UK for his schooling, he spoke no English but soon mastered the language and became an informal translator. Jean was immensely proud of him, and his achievements served as a reminder of the importance of seeing the person beyond their diagnosis.
Jea, her son Anders and dog Panda.
Jean also found creative ways to celebrate individuality and encourage others to embrace difference. She wrote a story about Panda, the family’s dog, titled Panda King of Enskede, for Anders. Panda had one blue eye and one brown eye, and the story helped convey the message that it is okay to be different. You can listen to the story on SoundCloud.
Jean was also an accomplished linguist and professional translator. Having grown up in the UK, she spent much of her adult life in Sweden after meeting Sven. Her ability to bridge languages and cultures reflected the international outlook that became such an important part of her work.
Her determination, energy and enthusiasm extended into many aspects of her life, including her love of tennis, table tennis, music and singing in a choir. These interests brought her joy and helped sustain her through difficult times.
Following the deaths of Sven and Anders, Jean continued to take a keen interest in advances in our understanding of PWS and in IPWSO’s work to support families around the world. Her commitment to the community endured through profound personal loss, and her legacy remains inseparable from the love that inspired it. Through her generosity, Jean also established the Jean Phillips-Martinsson Fund in 2020 and 2021, in memory of Anders and Sven. The fund has supported IPWSO’s global mission, advocacy work and the expansion of its staff, helping the organisation reach and support more people across the world.
Her legacy lives on
Jean’s influence reaches far beyond the organisation she founded. It lives on in national PWS associations, in the connections between families and professionals, and in the many people who have found understanding and support through the global PWS community.
Her vision helped create a place where families could come together, share their experiences and work towards a better future for people with PWS. The importance of that work remains as great today as it was in 1991. We extend our heartfelt condolences to everyone who knew and loved Jean. We are deeply grateful for all that she gave to IPWSO and to the countless people with PWS, families, clinicians and professionals whose lives have been touched by her work.
Jean’s vision continues to guide us, and we will honour her memory by carrying that work forward.
Remembering Jean through IPWSO
Many people have asked how they might honour Jean’s memory. For those who wish to do so, a gift to IPWSO would be a meaningful way to celebrate her remarkable legacy and help continue the work to which she dedicated so much of her life, supporting people with PWS and their families around the world.
To learn more about IPWSO’s work, please visit ipwso.org. You can also read about the Jean Phillips-Martinsson Fund.