This is Lin’s story who has volunteered for FPWR UK for 6 years, in this blog she has shared how volunteering has how it helped her, her family and her Grandson William who has PWS:
HOW I STARTED VOLUNTEERING FOR FPWR.UK
Shortly after our grandson William was born, one of my neighbours knocked and asked if the church toddler group she ran, could raise money for PWS. Our daughter, Catherine, wanted to support FPWR.UK, as it was the only charity purely funding RESEARCH and run by volunteers, with very few overheads. LIGHTBULB MOMENT- I could fundraise myself! As a family, this is what we decided to do!
I felt motivated and focused, which helped me accept William’s diagnosis and that I was doing something positive!
I started by writing to all the Masonic Lodges, Round Table, and local charitable groups which produced several cheque donations and then did whatever it took to raise money and awareness. There followed charity evenings, lots of store collections at Tescos, Morrisons and Aldi ( although Covid put a spoke in the wheel with those,) football and rugby ground collections, book sales at the gym, One Small Step walks, charity runs, Go Orange garden teas, afternoon tea at a bistro , raffles, scratch cards, and my favourite- a zip line challenge in St Lucia!
Over the last six years, I’ve seen the charity, under Catherine Shaw’s drive and determination, move forward from a standing start to become a charity striving to do as much as possible to help those suffering with Prader Willi Syndrome. It’s only with the help of volunteers and supporters who do amazing fundraising, that this is possible.
Volunteering doesn’t have to be time consuming or full on- as much or as little as you can manage, however I have found it an extremely positive experience, have met some lovely people and above all it has given me hope for a better future for our loved ones. It also made us realise how uninformed the general public is regarding PWS and gave us the opportunity to raise awareness, raise the charity’s profile and raise funds.
Maybe you would like to give it a go!!
This is Catherine’s story of why she has chosen to volunteer for FPWR UK and how she has helped transform this charity through a passion of research and finding ways to improve her Daughters life, FPWR UK wouldn’t be what it is today without Catherine –
“When you have a child with any medical condition you quite often feel helpless. This is very much how I felt after my daughter’s birth. I could learn about and cater for her day to day needs, but I couldn’t make her better, which broke my heart.
I still can’t make her better, but through volunteering with FPWR UK, I feel that I am working towards that goal of making her life easier and finding treatments and therapies to help. I am not a bystander watching this rocky journey she is on, I am working to make the journey less bumpy. I am doing something. I have a purpose.
My time isn’t consistent, some weeks I might do an hour, some weeks 10 hours. Sometimes, life throws a curve ball and I need to deal with that first. Sometimes I’m so wrapped up in a fundraising idea, I feel like I eat, sleep and breathe it! Volunteering doesn’t need to be all consuming, or even a regular commitment, it is doing what you can, when you can and making a difference.
The one thing to remember is every man hour gifted to the charity through volunteering is a man hour that we don’t have to pay staff for. I am extremely proud to be part of a charity that can commit 89% of the income to the primary goal – RESEARCH! This is only possibly because of the volunteers we have on board.
I feel privileged to be working with FPWR UK, and knowing that I am making a difference to the lives of those with PWS.”