This is Angie, she has volunteered to help us here at the FPWR UK with support on our social medias, with fundraising and from experience – with some great ideas! She is a Mummy of 2 – her youngest is Zoe who has PWS. Please read her story here –
“Hi I’m Angie and I’m mum to Zoe with PWS and her older sister Emilie.
We’ve always been big supporters of FPWR UK and FPWR globally. We’ve fundraised for the charity and also gathered lots of information from FPWR Conferences, webinars and information bulletins. I’ve recently volunteered to do all I can to help the charity and hopefully help to raise more awareness of PWS in general, the research that’s going on and of course to keep pushing to raise those vital funds needed for all of the exciting research projects that are underway and upcoming. I’m confident that there will be breakthroughs that can lead to the goal we all share of easing the many obstacles that PWS throws at our loved ones.
I remember when Zoe was diagnosed I went into that phase they tell you not to but you just can’t help- reading everything I could on PWS! The good, the bad and the confusing. I remember stumbling on research regarding oxytocin and being filled with so much hope and relief that they have found something that would help Zoe. I naively thought to myself how lucky are we that Zoe has just had this diagnosis and already there is something that can make things so much easier for her. However it turned out it was not as straightforward as I had initially hoped and my dreams of the ‘magic breakthrough’ were knocked. However what I didn’t understand at the time was the complexities and the down right ‘long haul’ that the research process is. There may be thousands of nos before there is a yes but that is why it is so important to keep pushing ahead and to keep bringing in the vital funds needed to support the process.
We are a little further down the PWS road now and those initial days of hoping for the ‘magic pill’ that will transform the lives of everyone with PWS in one go, have shifted more towards dreams of individual breakthroughs in the different areas of PWS. My hopes are for treatments and therapies that will address individual areas of PWS and it’s those hopes that have driven me to want to do more for FPWR and their quest to make these dreams possible.”
Most recently my passion for research and its possibilities has been reignited by the Vagus Nerve Stimulation (VNS) trials that will hopefully soon be underway. I read the FPWR report on the initial studies done here in the UK and actually cried real tears at the results and the changes it had made to the participants’ lives. Whilst the study did not have any impact upon the hunger side of PWS, the effects on temper and behaviour were huge and excited me that this could become something that could help the wider PWS population, including us. Again it will take time, research and of course money, which is why it’s so important to keep the faith in research and for people to continue to be inspired to fundraise and push for breakthroughs.
FPWR UK are a charity committed to the goal of driving research to alleviate the challenges of PWS. They have minimal overheads and their funds are used to create, build and assist in a variety of projects across all areas of PWS. I love this and it is why I want to help in any way I can.
Through research we will find answers, solutions, treatments and hope. Breakthroughs are happening and will continue to happen, we just need to help this to happen in every way we can.“
Were looking forward to working with you Angie! 🙂