Ataxia UK Board of Trustees
Our Board of Trustees is made up of people who have a variety of skills and experience that contribute to the running of Ataxia UK, including people with ataxia; people with previous board experience; an ambassador for the 16-30s; a scientific advisor; people who have experience in business, finance, local government and fundraising for major projects; plus, members of our Branch network. Professor Barry Hunt has been a trustee for many years but left his role of trustee in 2021 and re-joined in 2022 as Scientific Advisor to the Board.
All Ataxia UK staff are currently working from a Hybrid workplace model and the Board currently follow the same process which offers more flexibility for trustees to attend our Board meetings and committee meetings. We are hoping to meet in person this year for our two regional meetings in May & November, providing it's safe to do so. Our CEO, Sue Millman, has Monthly Chair meetings on Teams with the Chair, William Littleboy and many of our Trustees are members of our Finance, Fundraising & Research committees and sub-committees.
All Board members have attended an Equality & Diversity training day with Dr Ossie Stuart. Many of our trustees are part of our Diversity group which meets regularly.
JOIN THE BOARD...
We currently have vacancies on the Board of Trustees. There is an additional place for someone with fundraising or marketing experience who will be appointed by co-option. All posts are subject to interview and the elections take place in September. You can find more information including a job description by clicking here.
Anyone interested will be welcomed at an online information seminar with the Chairs of Trustees and Sue Millman, please let Sue know of your interest by emailing firstname.lastname@example.org.
Ataxia UK is a Charity organization and limited company. Please click here to view our latest Articles of Association.
Meet our Board...
William has been diagnosed with ataxia himself and brings his financial expertise from a long career in the finance sector and as a recently-retired Chief Operating Officer of Standard Life Aberdeen to the Ataxia UK Board.
Kathy’s husband Phil was diagnosed with cerebellar ataxia and took ill health-retirement four years later. This prompted Kathy to take part-time employment, therefore giving them more time to spend together and with their family, and to give Kathy time to use her skills to support Ataxia UK.
She is an FMAAT qualified accountant and has been a trustee and the treasurer of Ataxia UK since 2018. Kathy was recently promoted to Finance Business Partner for WISE, a not-for-profit organisation originally set up to support getting more women into STEM (Science, Technology, Engineering and Mathematics) careers, but now more widely supporting companies on their Diversity and Inclusion journey. Prior to that, she was Head of Finance for Harrogate Neighbours Housing Association: a not-for-profit organization with charitable status caring for elderly people in and around Harrogate.
In her spare time, Kathy is an active member (and secretary) of her local WI and plays the organ and sings at their local church.
“I feel joining the Board of Trustees at Ataxia UK is a vital and stimulating role - ensuring the charity is not only reaching its goals but is forward-thinking and creative to run as efficiently as possible.
I have cerebellar ataxia and worked, until recently, as a project manager within the international finance and investment sector for many years. Prior to this, I worked in public service, serving with the Diplomatic Service overseas in India and Ghana and then after a short career break with my young family moved to work for several years with the local Member of Parliament in his constituency office.
I maintain an active interest in public service and supporting the community and have for many years been a member of the Governing Body at school the local secondary school.”
Carol is an Ataxia Ambassador. She looks forward most to “building on the good work that has gone before and being part of exciting times ahead. There are new Trustees with fresh blood and research is bringing treatments closer to our grasp – an exciting time to be on board!”.
I'm Gemma Fish, a 32-year-old with Episodic Ataxia Type 2. I have had EA2 since I was 13 months old. I've been involved with my local ataxia support group since 2010, but I've been involved with Ataxia UK itself since 2013. I was first elected as a trustee when I was 23 and I fundraised for many years. I became a Youth Ambassador as my passion is to help and support children and young people affected by ataxia. I have been involved with the 16-30's project since it began and now run the project. Through leading support groups, being a trustee, a youth ambassador and having a seat on our In Control sub-committee, I really hope I'm making a difference in our community.
Harriet has idiopathic cerebellar ataxia that was diagnosed 31 years ago. She grew up in Lancashire and trained and worked as a doctor in Glasgow until she took medical retirement in 2012. Harriet was Chairman of the Trustees of Ataxia UK from 2012-2019. As well as doing various other volunteer roles within Ataxia UK, she would once again like to be involved in the governance of the charity.
Harriet married Richard in June 2022, becoming a ‘Brown’ after 46 years of being a ‘Bonney’! They live in Lancashire with their cocker spaniel, Henry. As well as enjoying spending time with both her boys, she enjoys reading, and doing Pilates and has recently become a Governor of a local school.
Rachel has developed her experience through many volunteer roles. Rachel works in governance, coproduction and peer leadership with Hampshire County Council, University of Southampton and within various NHS work streams. Rachel lives independently with help from PAs who are employed by Rachel using direct payment.
Robert has been an actor for 30 years. He has also produced and directed critically acclaimed and award-winning theatre and film. He is the voice of many familiar brands and reads audiobooks for the charity Listening Books. Robert also teaches drama and performance skills at Ballet Central.
In May 2018, Robert sadly lost his aunt due to ataxia and promised himself to do everything he could to help people with the condition and hopefully, one day find a cure. His mother has lived with ataxia for 40 years. This has been Robert's inspiration to join the charity as a Trustee.
Robert also has a strong fundraising drive, having run five marathons.
Scientific Advisor to the Board
Professor Barry Hunt
Professor Barry Hunt has been a trustee of Ataxia UK since 1999. He chaired its Scientific Advisory Committee from its inception in 2000 until March 2012 and continues to be the Committee’s link with the Board of Trustees. In November 2021, Barry left the Board as a trustee but continues as Scientific Advisor to the Board.
Barry has a doctorate in pharmacology and was appointed Dean of the Faculty of Health and Human Sciences of the University of Hertfordshire in 2005, and its Pro-Vice-Chancellor in 2009, positions which he still holds. In addition, he is Chairman of the university’s ethics committee. He has had a long-term association with the review of clinical trials and now chairs a National Research Ethics Service (NRES) ethics committee. He is also a Member of the Royal Pharmaceutical Society of Great Britain and of the British Pharmacological Society. He is currently a shadow governor and member of the Involvement Committee of the East and North Hertfordshire NHS Trust and has previously held numerous other governance roles in health and education.
Barry is indispensable in assisting Ataxia UK's Research department to take part in our bi-annual International Ataxia Research Conference.
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