You may be aware that there are 2 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 eliminate the challenges of PWS, change the future and in turn give hope to all those affected by this syndrome. 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 “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 “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!