Tracy Lynch

Co-Founder & Chief Executive

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 Jody Blake from WellChild, the WS Family Co-ordinator.

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.

Paul Lynch

Co-Founder, Head of Fundraising, Trustee

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.

Alan Nye

Treasurer, Trustee

I have been involved with WSUK from the outset and it is my responsibility to communicate the information we collate to as many families, professionals, stakeholders and interested parties as possible to enrich our knowledge of this syndrome. We have developed this new website to improve the delivery of information and your user experience

Prof Timothy Barrett

Head of WS Research & Clinics, Trustee

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.

https://www.birmingham.ac.uk/staff/profiles/cancer-genomic/barrett-timothy.aspx

Abby Gardner

Trustee

At the age of 12, I was diagnosed with wolfram syndrome. There was no charity specific to the rare disease until WSUK was founded by Tracy and Paul. I have now completed a degree in psychology and have seen the development of WSUK, not only as a patient, but as someone who is keen to be involved with the amazing work that has been and will continue to be done by WSUK. The support I have received since my diagnosis has been incredible, and I am excited to have the opportunity to actively support others who are affected with Wolfram syndrome, as well as their family and friends.

Gina Isherwood PhD

Grants Co-ordinator

As the grants co-ordinator at Wolfram Syndrome UK, I have responsibility for sourcing much needed funds from external providers to help better support our WS families and complement our own fundraising activities.

I first became aware of Wolfram Syndrome through becoming friends with Paul and Tracy Lynch. How they both support their daughter and drive the charity’s activities is truly remarkable. They inspired me to help raise funds through personal donations and attending their events, so I felt proud to help when they asked me to take on this role in the charity.

Prior to being involved with Wolfram Syndrome UK, I spent almost 20 years working with global pharmaceutical companies. I also have a PhD in cardiovascular biochemistry from the William Harvey Research Institute, London, founded by the Nobel Prize laureate Sir John Vane.

John Isherwood

Chair of the Board of Trustees

As the chair of the board of trustees, my role is to provide direction and support to the charity, ensuring that we maximise the benefit of our resources in delivering our three key aims, namely to increase awareness (inform), to support WS affected children and adults, their carers and their families (support) and to aid the ongoing medical research to find a cure.

I first met Paul years ago, playing cricket together, and have seen first-hand the challenges that both he and Tracy have gone through in caring for their daughter who is affected by Wolfram Syndrome. For them to then have the energy and passion to set up this charity such that other families can benefit from their experience is inspiring.

I have worked in asset management for investment banks and funds and through that role have held a number of board positions. I hope that this experience allows me to provide assistance and advice to the board to help us to meet our goals and ultimately benefit everyone affected by Wolfram Syndrome.