PWSA UK is governed by a Board of Trustees which comprises parents of people with PWS and others, with a wide range of skills.
Hi, I'm Philip Kennedy (prefer to be called Phil) and I'm married to Kim. I'm 55 years old and Kim and I have 2 grown up children of 32 and 28 years of age and we are expecting our first grandchild in March of this year.
I've spent over 30 years in Financial Services in senior management/board roles in marketing, business development, and operations management. I'm currently Business Development Director for Legal & General but will be retiring in March 2014.
My beautiful red haired niece, Polly Long, who is currently 2 years old has PWS and the Association have been very supportive of Polly and her parents Paul and Liz.
I'm very excited at the prospect of working as a trustee to help PWSA UK and hope to bring my management experience and, in particular, marketing and business development experience to help the Association become more widely known and to help with fundraising.
I became aware of Prader-Willi Syndrome when my granddaughter, Elsie, was born in February 2009. I have 40 years experience in banking and retired in 1998. Since then I have become involved in various local activities, including auditing accounts for the local church and youth club. I am also a Parish Councillor. I play golf when I can and weather permitting and also belong to our village walking group.
John has been a trustee since 1991, chairman from 1996 to 2001 and again from 2006-8. Working life was spent in the oil and gas industry. He and Rosemary, who was also a trustee for many years, have 3 children. Rachel, now 50, has PWS and has lived at The Lodge at Market Overton for nearly 20 years.
I first came across PWS in the early 1990's when a member of staff told me about his nephew who had the syndrome. This young man moved into a residential home I was general manager for, supposedly for short term (6 weeks), he stayed 6 months due to lack of suitable provision. In 1998, opened a specialist home for adults with PWS in East Sussex. Over 16 years, this grew to 5 residential homes and a supported living service, all specialist PWS. The company was sold to in January 2014 and I then joined the Trustee Board, a role which I thoroughly enjoy and which helps me to keep in touch with many of the people I have had the good fortune to meet over the years.
Ian has been a member of the board of trustees for 5 years, and he has held the post of Secretary for the past 4 years. His daughter Eve is 13 years old and has PWS. Ian supports the charity in many ways and has even run the Virgin London Marathon on our behalf.
I now live in Chiswick in West London but my heart lies in the Peak District where I misspent my youth.
I read Law at Manchester University in the early 1970s. I then moved to London to work as a legal editor for the publishing firm, Sweet & Maxwell. I left publishing to qualify as a Solicitor and was admitted in 1980. I originally worked in local government but transferred to private practice in 1987, specialising in care proceedings. I was a member of the Law Society's Children Panel which enabled me to represent children when they were removed from their parents' care. I retired from practice at the end of 2011 worn out by the vagaries of the legal aid system.
As well as trustee work for the PWSA UK I am a volunteer case study writer with the charity, Missing People. I have a daughter, Rebecca, aged 24, with PWS. Rebecca lives at home with her father and me but is in paid employment and leads a relatively independent life.
I’m very happy to have been accepted onto the trustee board of the PWSA.
My daughter, Rose, was diagnosed with PWS 10 years ago, when she was born. I remember looking down at her and feeling utterly lost, wondering if she would ever walk, talk or even open her eyes. Over the next ten years she surpassed every expectation we ever had of her and has blossomed into a happy, intelligent and thoroughly lovely young person.
My work background is in the media. I have worked in radio, TV and social media and I now work as a digital content producer for the BBC. I’m pleased to be able to use my skills in social media, editorial strategy and website management in my trustee work with the association.
Hello - I'm Robin and I am delighted to put my name forward as a candidate trustee for the PWSA (UK).
My wife Emma and I are the proud parents of our five year old son Clive who has PWS and his cheeky little brother Max who is 10 months old.
I happen to be a doctor (cardiologist in 'training') and am currently undertaking my research doctorate at University College London. I am keen to help organise research trials in the UK for our PWS families. Though my specialty is hearts and not Prader-Willi syndrome, I am well versed in the governance and logistics maze of clinical research in the UK and hope to help PWS consultants across the country with trial initiatives.
I believe that there are many promising developments in PWS research on the horizon -- and that these will lead to tangible benefits for our children. However, I am also now more aware that social support and educational resources for the daily behavioural and life challenges inherent in PWS also need priority.
We are very proud to have Professor Tony Holland CBE, from the Cambridge Intellectual and Developmental
Disabilities Research Group as our Patron.
Tony Holland trained in Medicine at University College and University College Hospital, London, qualifying in 1973. After some years in General Medicine he trained in Psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. From 1992 to 2002 he held a University Lecturer’s post in the Section of Developmental Psychiatry in the University of Cambridge, and in 2002 was awarded the Health Foundation Chair in Learning Disability, establishing the Cambridge Intellectual and Developmental Disabilities Research Group. This multidisciplinary group undertakes a broad range of research relevant to people with intellectual disabilities. His specific interests include the eating, behavioural and mental health problems associated with Prader Willi Syndrome; the relationship between Down’s syndrome and Alzheimer’s disease, and also clinical/legal issues relevant to the needs of people with intellectual disabilities. In 2010 he was elected a Fellow of the Academy of
Medical Sciences and was awarded a CBE by the Queen in 2015.