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Registered charity no: 1098918
 

The Trust and Objectives

Our status
The Trust is a registered Charity under the Charity Commission for England & Wales, Charity Registration number is 1098918.

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Trustees

Alan Brooking – Chairman
I was born in Torquay, Devon in 1953 and married Dee in 1979. We live in Harlow, Essex and have a daughter, Ellie who was born in 1994.

I was educated in Towyn, Mid-Wales and Blandford, Dorset before joining the Royal Navy. After 10 years, I left the Navy in 1981 and settled in Harlow. I worked in two IT service organisations before joining CSF in 1994, where I am now Operations Director.

My main hobbies are anything to do with sport, but predominantly Harlow Rugby Club, where I have been player, Captain, Coach, Manager and now help out on the financial side of the Club.

Chris Keeble – Treasurer
I live in a small village outside Colchester on the Essex/Suffolk border, with my wife Tracey and our two daughters Natasha and Gabby.

I have been involved with the JJT since the inception of the trust, and it has been a privilege to try and help Tina, Mark and the children in some small way.

After attending school in Chelmsford and university in Birmingham, I opted for a finance career, and have been qualified as a Chartered Accountant for well over 20 years now, which at least has made me of some use to the JJT! I spent many years as Finance Director for the CSF Group in London, where I got to know Tina as both a colleague and friend, but since 2007 I have taken a role closer to home as Finance Director for GFM Holdings.

Besides my family and my career, my primary interests revolve around music, reading and sport. I am an avid lover of music, with an ever-expanding collection of CDs, and a regular attendee at gigs. I have tried to keep the years at bay by running, and as a result I have run several marathons and half marathons for charity, and in 2007 completed the thrilling challenge of climbing Kilimanjaro with my fellow trustee Alan, raising much needed funds for the JJT. I still waste time and money shouting from the stands at West Ham – some things will never change.

As both a friend and colleague of Tina’s for many years, and a parent blessed with two beautiful children, I want to help raise the profile of Batten’s Disease in any way I can, and to give Batten’s children the chance of life that they deserve.

Zoë Sherwin – Secretary
I was born in Poole, Dorset in 1968 and spent my childhood in the West Country: Dorset, Somerset and later Exeter in Devon. I then went to Lancaster University, where I studied German Studies, graduating with a 2:1 degree in 1991. I began my working life as a trainee manager for Wine Rack (indulging my love of wine), later moving in to the IT industry, working for Hamilton Rentals and then for CSF Group for 6 years as Product Manager. For the last 5 years, I have worked for Which? as Operations Manager.

I am married to Mark, who is a primary school teacher. We have two children, William and Poppy and live in North East London. Aside from my job, my time is pretty much taken up with my young children. I also enjoy socialising with friends, gardening, listening to music and cooking (although Mark is a far better chef than I am!).

Tina and Mark (Harris) are very dear friends, and we have known Jordan since the day he was born. We want to do everything possible to help Jordan, and other children like him.

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Clive Myers – Trustee
I was born in 1967. Upon leaving school, I embarked on a career with a firm of Chartered Accountants and began to study for my professional exams. I qualified as a Certified Accountant in 1992 and in total spent 12 years working in the profession. I joined IT company, CSF, in 1996 and now work as the Group Financial Controller.

I live in Chigwell in Essex with my wife, Debbie, and two children James and Anna. Debbie is a full-time mum, but has been very involved with the school PTA where our children attend.

My hobbies include all sports. In particular, I enjoy playing squash and have run the London Marathon twice for children’s charities. I also enjoy motorcycling, music and reading.

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Tina Harris – Events Coordinator
I am mum to Jordan, Jasmine and their baby sister Mia (who doesn’t have the defective gene).

I was born in 1963 and grew up in Fredericia in Denmark. I met my husband Mark, who is British, on holiday in Greece in 1985 and we married in 1988. We spent our first couple of years together travelling and working around Europe before settling in South East London, where we still live now.

I have been in the IT industry in a customer services role all my working life and joined CSF in 1994 where I work in the Sales Administration Department part time.

I enjoy outdoor activities, have been a keen skier from the age of 5 and love travelling, however these days it’s difficult to focus on anything other than my children, my dreams and hopes for the future that a cure for this devastating disease will be found soon.

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Registered address
Chris Keeble
c/o GFM Holdings Limited
42 Phoenix Court
Hawkins Road
Colchester
Essex
CO2 8JY

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Objectives/activities
The principal objective of the Trust is to provide research funds for organisations working on treatments for Late Infantile Neuronal Ceriod Lipofuscinosis (CLN2), also know as Late Infantile Battens.

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