Our small team is based in our National Office in Derby and we are all committed to work with those affected by PWS with integrity, objectivity, accountability, openness, honesty and clear leadership, in order to underpin the ethical base of the Association.
I joined PWSA UK in March 2012 from the Motor Neurone Disease Association, an organisation which has many parallels with the PWS Association, and prior to that, the Donna Louise Trust, the children’s hospice service for Staffordshire. My background is in fundraising across a wide variety of streams and I have a Diploma in Fundraising. I am also a trustee of the Peter Pan Special Needs Nursery based in North Staffordshire where my specialism is charity governance and fundraising.
I have worked for PWSA UK for many years. My daughter has PWS and is 37 years old. My current role is Support Team Manager. I answer requests for support and information, and write much of the PWSA information for leaflets, PWS Journey and the website. I also am part of the training team which delivers training to professional carers and teachers, as well as facilitating the Residential Care and Supported Living Forum and planning the parent programme for our national conferences. I am currently a Board Member for the International PWS Organisation – a role I carry out on a voluntary basis in my own time.
I have been with the Association since 2008, steering the Association’s Financial structure to ensure a sustainable future, and develop the processes necessary to steer hard won funds toward the care & support services that the Association stands for. I cover all aspects of Financial & Management accounting.
Additionally, I am the Treasurer for the LMS Carriage Association, which is also a registered charity, combining my skill set with a hobby activity of restoring historic railway carriages originally built between 1860 and 1950.
Family activities take up much of my time, together with an interest in Wildlife Conservation, although I am less active than I used to be.
Hello I am Karen and I joined PWSA UK in May 2015. My role involves anything to do with fundraising including working with our corporate partners, applying to funders, arranging and attending events and meeting with our many, many amazing supporters. I have even been known to join in the events especially if there is a run involved.
Hi, I joined PWSA UK in August 2014 and am responsible for the Familynet project and our dedicated volunteers.
I have worked in the voluntary sector for over 15 year’s developing projects, managing and supporting volunteers.
I live is south west Birmingham with my family and love spending time with my two beautiful grandchildren. I am passionate about volunteering and I am on the management committee of a homeless provision in Worcestershire. To relax I enjoy running (slowly), walking and occasionally doing nothing at all!
I have worked for PWSA UK for many years. My current role is Support & Training Officer. I answer requests for support and information, I am part of the team which delivers training to professional carers and teachers, I plan the PWS programme for our national conferences and organise and host our family weekends. I am also Editor of the PWS Newsletter, the Association’s quarterly magazine.
I am a very proud Mum to a young girl with PWS, an have joined the association after working at Great Ormond Street Hospital for the last three years. I work closely with Jackie Waters, and my hope is that my experience, both as a parent and in a hospital setting, will enable me to support families throughout their journey.
My role includes managing and editing the website, monitoring PWSA UK's Twitter and Facebook, assisting fundraising activities, sending out and collating Instant News, managing all membership for the Association and I am also Editor of OWL News which goes out to our members each quarter. I completed a level 3 BTEC Diploma in Information Technology and Business Studies which massively helps with the website and social media aspects of my job.
I joined PWSA UK in November 2016 as Finance and Office Administrator. The role is working alonside all of the team assisting in all aspects of administration. It is a varied role but interesting, giving me an insight into charity work. I have supported charities but not worked in this field so it is a new challenge but one I am looking forward to.