Many of you will be aware that the 2021 conference recently finished and as well as giving us lots of useful information on important concerns like mental health and PWS, it also gave us a really useful summary of research and very promising drug trials. If you missed the conference you can access it via the FPWR YouTube channel. The work to increase our knowledge and research on PWS, so that we may develop treatments and transform what it means to have the condition, is a truly global effort. In fact FPWR UK is a sister charity to the FPWR in the United States. The FPWR has a team of scientists on their advisory board (including the famous Dr Jennifer Miller) ensuring the most promising research studies are selected. The FPWR works alongside other PWS Research charities across the globe to ensure there is a collaborative and co-ordinated approach to PWS research to continue to push our understanding and knowledge of this condition forward.
Want to know more, please read on………….
FPWR UK (established in 2010) is a sister charity to the FPWR based in the United States (established in 2003). Think of the FPWR as the mother ship and FPWR UK as a satellite station. Both FPWR and FPWR UK were set up by mothers of children with PWS. Started from nothing, with no government support, these charities have become hugely successful and are already changing the landscape of PWS.
The FPWR has a grant programme whereby they accept applications from academic, government, non-profit or for-profit research entities across the globe into the priority areas of PWS research. The scientific board of the FPWR review these applications annually and select the studies with the most promise which progress to full application. These finalists then get reviewed by three scientists and two advocates (usually parents to those with PWS to ensure they would have relevant impact) who put their recommendations through to the committee and a selection of studies are approved. The scientific board of the FPWR is VERY impressive, including our very own Dr Tony Goldstone (working out of Hammersmith hospital in London) and our much beloved Jennifer Miller so rest assured these applications are in great hands and the very best and most promising are selected.
Once the FPWR releases their list of approved research studies for the year, we as the FPWR UK then decide which of these projects we wish to fully/part fund depending on how much we have raised in the UK that year. This system allows the Prader Willi Research charities from several countries (the USA, UK, France, New Zealand, Australia and Belgium) to pool resources together to fund research and ensures there is no repetition in research projects. It really is a global approach pushing forward research into PWS, for example Theresa Strong (one of the founding members of the FPWR) is on the scientific advisory board of the Prader Willi Research Foundation of Australia. The good news is that is doesn’t matter WHERE the research takes place, everyone will benefit from its success. At the end of the day, all companies want to make money so when a successful drug is found, the pharmaceutical companies seek approval through all the different regulatory boards across the globe. What is important is that those most qualified to do the research, carry it out, so if the expertise for a specific genetics study is in France then it will take place in France. All the research charities work together to ensure the right research takes place in the right place to continue to take our understanding of PWS forward.