Ataxia UK Board of Trustees
Our Board of Trustees is made up of people who are all affected by ataxia, either through having the condition or a close relative with it. They have a wide variety of skills and experience that contribute to the running of Ataxia UK, including people with ataxia; people with previous board experience; a scientific advisor; people who have experience in business, finance, local government and fundraising for major projects; plus, members of our Branch network.
The Board meets 4-5 times a year. We aim to have one of these meetings as a residential face-to-face meeting. The rest of the meetings are online from 11am - 3.30pm on a Friday. People who are unable to travel at all are accommodated online for the face-to-face meetings.
Our CEO, Sue Millman, has monthly meetings online with the Chair and many of our trustees are members of our Finance, Fundraising & Research committees, and other sub-committees. Some of our trustees are members of our Equality, Diversity & Inclusion group which meets regularly. All trustees are onboarded as volunteers through our Services department and will be provided with GDPR, Safeguarding and EDI training.
If you are interested in becoming a trustee at Ataxia UK, please contact Lucy Porter, Executive Assistant, lporter@ataxia.org.uk along with a CV, so an initial meeting can be made with our CEO, Sue Millman. This meeting will be followed by an interview with several Trustees to assess your suitability and skills. If you are successful in the interview, you will go forward to the Trustees election, which is voted upon by Friends of Ataxia UK. You can find the trustee role description here.
To be a Trustee, you must be a Friend of Ataxia UK
Ataxia UK is a Charity organization and limited company. Please click here to view our latest Articles of Association.
Meet our Board...
Chair
William Littleboy
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.
Treasurer
Kathy Jones
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.
Trustee
Angela Hosie
“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.”
Trustee
Carol McCudden
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!”.
Trustee
Gemma Fish
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.
Trustee
Harriet Brown
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.
Trustee
Nathan Hall
Nathan’s son lives with Friedreichs Ataxia, so Nathan and his family have been connected to Ataxia UK for support and advice for a number of years. Nathan is a lay member of our Scientific Advisory Board, so he joins the Ataxia UK Board with a great understanding of ataxia research alongside his personal understanding of the ataxia diagnosis journey. He has extensive understanding of the NHS, having worked for 27 years as an NHS Manager, currently working at a national level for NHS England, improving NHS diagnostic services. He was born and brought up in the Welsh valleys and now lives in Wiltshire with his wife Claire and two teenage sons. He has established a Community Benefit Society that operates a community shop in his home village. In his spare time he enjoys playing guitar and watching sport, in particular supporting Wales rugby and Aston Villa football club.
Trustee
Olivia Wood
‘Two years ago, my Father was diagnosed with genetic ataxia SCA-6 after progressive balance and speech issues. Following this diagnosis, I underwent genetic testing which showed a predisposition for SCA-6. Ataxia UK were there to help when there was little readily available information and support for those with the condition.
They helped connect my Father to someone with ataxia to let him know he wasn’t alone and provided practical information for me to take to his appointments. With a professional background in charity and higher education fundraising, I was keen to support Ataxia UK the way they have with my family and I.
I am a part of the Development Board, supporting the marketing and fundraising efforts of the charity and in December I was delighted to be appointed to the Board of Trustees, fulfilling a lifelong personal dream, for a charity that couldn’t be closer to home or more worthy of my time. I look forward to providing strategic direction and fundraising expertise for Ataxia UK over the coming years.’
Trustee
Rachel Harrison
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.
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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