Tracy Lynch

Co-Founder & Chief Executive

If you phone or email the main office with a question or for information it will usually be myself you will speak to. I am involved in the media and fundraising side of things as well as the day to day running requirements of the charity.

I plan and organise the annual Wolfram Syndrome Conferences.

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.

Gina Isherwood PhD

Contracts Manager 

As the Contracts Manager, I have responsibility for actively managing WSUK’s contract with BWCH to help support the WS clinic services provided to children / young people and their families.

My responsibilities include line management of the family and adult support co-ordinators, ensuring that the team provides effective support to families and delivers high quality timely outputs to BWCH which meet our contractual requirements.

I’m also responsible for generating much needed funds through external providers to help extend the support we can offer the WS community, and I actively manage these grant awards.

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.

Georgina King

Family Support Co-Ordinator

As the Family Support Coordinator, I work in partnership with BWCH to support children and young people with Wolfram Syndrome. My role will include attending and supporting families with the WS MDT clinics based at Waterfall House. I will support families and advocate for them to ensure they feel fully supported during their life journey through childhood and adolescence.

Before working with WSUK, I have supported families in many roles, from volunteering to family support, working for the NHS as part of Royal Derby’s Children’s Hospital, to being a mentor for vulnerable young people who are at risk. I have a passion for working within communities and strengthening them. I intend to utilise my expertise to make a difference to the Wolfram Syndrome community.

Olivia Edwards

Family Support Co-Ordinator

With a decade of experience as a primary school teacher, I have had the privilege of working closely with children and their families. My passion for supporting families has always been at the heart of my work, guiding my approach to education and my interactions with the community. Transitioning into my new role, I bring with me not just years of experience, but a deep understanding of the challenges and joys that families face. I am dedicated to providing compassionate support, helping to empower families to navigate through difficult times and celebrate their successes. My background in education has equipped me with the skills to listen, understand, and respond to the unique needs of each family. I am committed to making a positive impact, ensuring that every family feels supported, valued, and empowered.

Phillippa Farrant

Adult Support Co-Ordinator

As the adult support co-ordinator, my role is to support adults affected by Wolfram Syndrome and their families from the time of transition from children’s services onwards. This will include supporting families through their life journey to help improve the quality of their lives and signposting them to information and relevant services. I will also help WS affected adults feel part of their community. I also lead the delivery of a project to help improve the emotional wellbeing of participating WS affected adults.

I have worked in the charity sector and more specifically rare disease for the past 25 years. I helped run a support group for families with children with Duchenne Muscular Dystrophy, which my son had. He sadly passed away in 2019, and I decided I needed a new focus and use my skills to help another group of people with a rare disease – Wolfram Syndrome.

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.

Paul Lynch

Co-Founder, Vice Chair and 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

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.