Going orange together for Prader-Willi syndrome

JHorsfall • May 26, 2023

PWSA UK and FPWR UK are kicking off a new collaboration by going orange together!

You may be aware that there are two PWS charities in the UK. PWSA UK and FPWR UK. Why is this the case? 


FPWR UK is solely dedicated to funding research into PWS - looking for drugs, therapies, and strategies that will change the future of PWS and give hope to all those affected. PWSA UK provides a helpline for those in crisis or needing help, mediation and support, as well as connecting families across the UK and providing information and training for professionals working with those with PWS in order to make day-to-day living with this syndrome more manageable.


Catherine Shaw, Chair and founder of FPWR UK, and Jackie Lodge, the new Chief Executive of PWSA UK, have met to discuss how the two organisations can work together to support the PWS community and further research to help eliminate the main challenges of PWS.


Catherine said: “We already know the PWS community is small but mighty. Collaborating is going to make us an even more powerful force to be reckoned with. This is a positive step for all those affected with PWS, giving a beacon of hope for the future.”


Jackie said: “It is a hugely exciting time to join the PWSA UK, but there are many challenges that face us as a community. It is ever more important that we collaborate and share our skills and knowledge. We can achieve so much more together!”


Catherine and Jackie have kicked off this new collaboration by going orange together to help raise awareness!

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A huge welcome to Jackie Lodge, PWSA UK's new CEO, who joins us today. Here's Jackie to introduce herself: I am truly honoured to be joining PWSA UK as your new CEO and it was a real pleasure to meet so many members and families at the recent conference. I am looking forward to working with you to help ensure that every member of the PWS community has access to high quality care, opportunity and support. I take over from Susan, who has led the charity so ably for more than 10 years. Susan has done so much for the PWS community across the UK, and she will be a hard act to follow. I have almost 30 years' experience working in the charity sector in a range of management roles. I was most recently the Chief Executive of an endowed charity in Surrey which provides supported housing, community buildings, and grants for organisations tackling need and poverty. I have led the charity for almost 15 years, developing new services as well as ensuring the long-term financial stability of the organisation. I am also Vice Chair of the People's Health Trust and a board member of Co-Op Homes. I previously worked for the British Heart Foundation, heading up the UK care and rehabilitation programs. During this time, I developed the BHF heart nurse programme to provide specialist care across the UK for people with heart failure. Prior to this, I held a range of management roles with the Age Concern federation supporting the governance of local organisations and the development of quality assurance for information and advice services. I have also held various trustee positions on local and international charities. I have a BA in Psychology and a master's degree in Charity Management from City University. I am married with two grown up children and live in Surrey with my border terrier. In my spare time, you’ll find me rowing on the River Thames or running alon g the tow path.
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