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Trustees and Patrons

Our Trustees

The Board of Trustees is responsible for overseeing the management of the charity to ensure it is effective in doing the job that it was set up to do. It is also their job to make sure that the A-T Society has the money necessary to carry out its work and that it is doing so in accordance with all the laws and regulations. So no small job…

Our trustees bring a wide range of skills and experience and there is a good balance of people who live with A-T and people who don’t. Each trustee plays a key role in the running of the charity and they passionately believe in the support services we provide to families, professionals and researchers and the investments we make into research projects.

Michael Detsiny

Chairman

Mike’s background is business specialising particularly in Marketing and Communications. He worked at a senior level for Smiths Food Group where he reintroduced the little blue bag of salt into Smiths Crisps, for Cadbury where he was responsible for the launch of Wispa and for Allied Breweries where he negotiated the introduction of Castlemaine XXXX into the UK. Midway through his career he decided to leave corporate life and started his own very successful advertising company, The Creative Business. In the last few years he has devoted much of his efforts to the charity sector and is Chairman of his local MS Society and has also been CEO of a charity working with adults with learning difficulties. Much of his time is now spent as Chairman of his local parish council. Mike has three children and lives in a tiny village in the Chilterns. He enjoys walking his three dogs and has been a season ticket holder of the football club he supports for over sixty years!
Mike Detsiny -Chairman

 

Andrew Mills

Treasurer

Andrew is a financial analyst and an expert on the UK financial sector. He runs a specialised financial research company based in Harpenden, serving clients across Europe, the US and Asia. Andrew is a member of the Institute of Chartered Accountants in England & Wales and the Chartered Institute of Securities and Investment, and a Fellow of the Royal Society of Arts. In addition to serving his clients, he contributes to the work of a number of City think tanks. Andrew has over twenty years of financial experience, including several as an auditor. Prior to joining the Board of Trustees, he spent five years as the Treasurer of a fast growing development charity. Andrew has no personal connection with A-T, but aims to use his professional and charitable experience to help the Society deliver greater benefits to those affected by A-T.

 

Linda Clarke

Trustee

Linda worked in the charitable sector for over 25 years, most recently as Director of a small specialist charity providing advocacy and legal advice for disabled people.  Her Trustee roles included being Vice Chair of an organisation providing housing and supported living for disabled adults and vulnerable people. She has a special interest in social policy and welfare issues. Linda strongly believes that every adult and child should have access to the opportunities to fulfil their potential whatever their circumstances. She is the grandmother of a learning disabled child and lives in St Albans, not far from the A-T Society office.

 

Lynda Finn

Trustee

Formerly head of education for a national neurological organisation, Lynda has also worked elsewhere in the health-related voluntary sector and as a nurse and lecturer in further education.  She is keen to see high quality health and social care available to everyone who needs it, especially those living with complex, rare, disabling conditions which may not attract large resources.

Penny Jeggo

Trustee

Penny is a senior scientist at the Genome Damage and Stability Centre, part of the University of Sussex. She has worked on the DNA damage response following exposure to ionising radiation for many years. The protein defective in A-T, ATM, lies at the core of this response and so her research, although not focused specifically on ATM, has centred on the cellular processes that involve ATM. Penny is now winding down towards retirement but continues to run a smaller research laboratory. Penny said “I have been amazed by the strength of character and spirit of A-T patients and their families and would like to contribute to the A-T society at this later stage of my career and as I hope to gain more free time. I hope that my scientific expertise and experience can be of value to the society.”

 

Hasita Senanayake

Trustee

Hasita became involved in the A-T Society primarily because his son had A-T and so Hasita wanted to lend a hand in the development of the A-T Society. He wanted to support the charity as his family benefited a lot from the support of the charity when they were told of theirs son’s condition.

 

Lian Yarlett

Trustee

After her youngest daughter was diagnosed Lian became aware of the A- T Society and contacted them for support and guidance.  Lian then started fundraising and assisting where she could in supporting the work of the Society.  She was invited to join the Board of Trustees in 2006 and undertook the role of Chairman from 2011-2015.  She is passionate about the evolvement of the A-T Society and is keen to ensure that the charity is there for every A-T family that needs them, provides support and invests in research.

 

Jilly Shah

Trustee

Jilly is a qualified pharmacist turned baker. She worked as a pharmacist for 6 years before “retiring” and starting her baking venture, Jilly’s Cupcake House.
These days, she spends her time taking cake and cupcake orders for occasions and events, with the sole purpose of raising money for the A-T Society.
When William invited Jilly to join the board a few month ago she took it as an opportunity to show people that having A-T doesn’t stop you from doing the things you love. Raising money through Jilly’s Cupcake House not only means donations to the Society, but it also means raising awareness about A-T, across the U.K. one cupcake at a time.
Jilly 2

 

Our Patrons

A patron is a celebrity or person of influence who is willing to be a figurehead for the charity. This is an ongoing relationship and the patron and charity build up a working relationship which works for both parties.

A patron is not a trustee and they do not have any responsibility for the management of the organisation and none of the legal responsibilities of the trustees. Their purpose is to lend credibility and raise the profile of the A-T Society. This will be of tremendous help with fundraising, campaigning and public relations.

 

We are delighted to have the support of our Patrons

The Lord Bilimoria of Chelsea CBE DL

Mr Brian Conley

Mrs Joan Morecambe

The Lady Parkinson DL

Revd Paul Thomas OBE

Ms Susannah Harker

 

Becoming a Patron
We would be delighted to welcome new Patrons to support the A-T Society. If you are interested in taking an active role in raising the profile of the A-T Society please contact us.