who's who at WSUK
If you phone or email the office with a question or for information it will usually be myself you will get. I am also involved in the media and fundraising side of things.
I co-organise the annual Wolfram Syndrome Conference with Rachel Bates from WellChild, the WS Family co-ordinator. If you want to book the WSUK caravan in Pagham then I am the one to take your booking.
Prior to setting up the charity and becoming the main carer for my daughter I had been working as a Bookkeeper and Payroll Assistant for a local firm of Accountants. I have worked previously in travel currency, retail and catering.
I became involved in the charity to support my brother and his wife in their quest to raise awareness of Wolfram Syndrome.
I have organised charity events including an annual WSUK golf day.
My business Penfold Verrall Ltd recently entered into a partnership with WSUK with the aim to help fund the national conference and raise the profile of the charity.
When my daughter Jennifer was diagnosed with Wolfram Syndrome in 2010, it was very apparent that very little was known about this complex condition.
As we left the hospital with a single A4 sheet of paper with a few facts about WS and an obsolete web site address and the words "I'm sorry but this is all the information we could find ", I was shocked! Not only at the news of my daughter's diagnosis but at the lack of information available to sufferers / parents and medical professionals alike.
It was clear to me that the UK needed a Support group where we could all get useful information and where people could talk and to meet other families; and that we needed to get the information we have to the public and to the medical professionals.
So my wife Tracy and I started WSUK; our aim is for the charity to continue to help WS families and raise awareness and much needed funds to help with research.
Having worked alongside Paul Lynch on various other fundraising and charitable events over many years it was a natural progression for me to join WSUK.
My role is to spread the word and educate everyone about Wolfram Syndrome.
Professor of Paediatrics, service lead for the NHS England national specialist MDT service for Wolfram syndrome (children and adults).
He is trained as a paediatric endocrinologist and diabetologist, and has an honorary contract with Birmingham Children's Hospital and Queen Elizabeth Hospital Birmingham.
He heads a research team at University of Birmingham, investigating mechanisms of disease and treatments for Wolfram syndrome.
I am Paul and Darren’s uncle so it was natural for me to try to do whatever I could to support the charity as it was being created. My background is in education and academic work so I am probably most useful in writing documentation.
WS-UK has been a very dynamic organisation and we have to try to maintain that momentum.