CIO
Batten Disease Family Association CIO
Report and Financial Statements
For the period 9th November 2023 - August 2024
CONTENTS
About the Batten Disease Family Association ................................................................ 3 Meet the Board of Trustees ........................................................................................... 4 Trustees’ Report ........................................................................................................... 5 Legal and Administration Information of Batten Disease Family Association CIO ........... 6
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About the Batten Disease Family Association
The Batten Disease Family Association was formed in 1998 and became a registered unincorporated charity in 2001. The BDFA CIO became a registered charity on the 9th November 2023 and we successfully completed the transition to a CIO (Charitable Incorporated Organisation) on 1st September 2024.
ABOUT BATTEN DISEASE
STRUCTURE AND MANAGEMENT
Batten disease, or the Neuronal Ceroid Lipofuscinoses (NCL), is a family of rare diseases caused by autosomal recessive genetic mutations. They are lysosomal 12M storage disorders where genetic mutations disrupt the cells’ ability to recycle wastes. Cells are thrown out of balance with the build-up of proteins and lipids (fats). There are 13 known forms of Batten disease and you will often hear them referred to as CLN1-CLN14. It is estimated that 2-4 births per 100,000 in the UK are affected by Batten disease, or about 10 a year. Batten disease is neurodegenerative and causes a progressive loss of skills. Children lose their ability to walk and talk, swallow and see. Batten disease also causes childhood dementia and intractable epilepsy. There is one treatment available for CLN2 disease. Other treatments13% are being developed.
The strategy and oversight of the BDFA are directed by the trustees. The day to day management is delegated to the Chief Executive.
During the period under review, the charity was incorporated but not operational. Upon the successful transition to a CIO on 1st September 2024 the following staff team members are employed:
Liz Brownnutt, Chief Executive Officer
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Before engaging in client transactions, we conduct Dr Joanna Nightingale, Head of Scientific Affairs
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a Reputational Risk Review Process to identifyThere is one
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potential environmental and social risks and applyLisa Forsyth, Team Admin Officer
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internal policies and guidelines.We have also Mimi Petty, Peer Befriending Coordinator
OUR MISSION
- products and services that incorporate economic Sarah Chandler, Fundraising Assistant
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies 20% and ultimately a range of cures.
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Sarah Kenrick, Family Support Partner,
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as a contractor
Our objectives are to:
a) Preserve and protect the health and promote the welfare of persons affected by all types of Neuronal Ceroid Lipofuscinosis (NCL) commonly known as Batten disease.
b) To advance the education of the medical profession and the general public on the subject of Batten disease and its implications for the family.
c) To promote research into the management of Batten disease and to publish the useful results thereof and to support organisations prompting research into Batten disease.
HOW THE BOARD WORKS
The Board of trustees meet four times a year with the CEO to assess progress in relation to strategy and key projects. We are committed to attracting a diverse range of trustees. These meetings are also occasionally attended by members of the team such as the Head of Scientific Affairs and Family Support Partner to report on progress regarding key activities.
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Meet the board of trustees
Upon incorporation, the following were appointed to act as trustees of the charity and were trustees throughout the period of review.
Under the rules of the constitution the trustees must retire at the first Annual General Meeting.
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Zlatko Sisic, Chair of Trustees
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Mark Thompson, Treasurer
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Bob Thompson
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Simon Sewart
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Trustees' Report
Financial Review
During the period under review the BDFA CIO was incorporated but not operational. There were no financial activities and therefore no balance sheet to report.
During this period activities were focused upon establishing new banking relationships and registering with governmental and taxation authorities.
On 8th August 2024 a transfer agreement upon Incorporation was signed by BATTEN DISEASE FAMILY ASSOCIATION (BDFA) (charity number 108908) and BATTEN DISEASE FAMILY ASSOCIATION CIO (BDFA CIO) (Charity number 1205650).
Under this agreement all of the assets and liabilities of the BDFA were transferred to the BDFA CIO shortly after midnight on the 31st August 2024.
From the 1st September 2024 the activities of the charity are being undertaken by the BDFA CIO.
Nigel Nicholls Chair of Trustees BDFA
Mark Thompson Treasurer, BDFA
18th June 2025
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Legal and Administration Information of Batten Disease Family Association CIO
| Charity number | 1205650 | 1205650 | Scientific and Medical Advisers |
|---|---|---|---|
| Professor Sara Mole | |||
| Principal Address | PO Box 379 | Professor in Molecular Cell Biology, UCL | |
| Shipley | Great Ormond Street Hospital Children’s Charity Professor | ||
| BD18 9GE | MRC Laboratory for Molecular Cell Biology | ||
| University College London | |||
| Independent ExaminerTC Group The Courtyard |
Gower Street London WC1E 6BT |
||
| Shoreham Road | |||
| Upper Beeding | Professor Paul Gissen | ||
| Steyning | Wellcome Trust Senior Research Fellow in Clinical | ||
| West Sussex | Sciences & Consultant in Paediatric Metabolic Medicine | ||
| BN44 3TN | Great Ormond Street Hospital | ||
| Great Ormond Street | |||
| Bankers | Metro Bank PLC | London WC1N 3JH | |
| One Southampton Row | |||
| London | Dr Ruth Williams | ||
| WC1B 5HA | Consultant Paediatric Neurologist | ||
| Evelina London Children’s Hospital | |||
| Westminster Bridge Road | |||
| South Bank | |||
| London SE1 7EH |
Legal Adviser H3 Solicitors Suite 1 The Old Pig Styes Brighthams Farm Bines Road Partridge Green West Sussex RH13 8EQ
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CIO
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Batten Disease Family Association CIO PO Box 379, Shipley, BD18 9GE
07354 486586 www.bdfa-uk.org.uk
@bdfabattendisease
@bdfauk
@battendiseaseuk
@batten-disease-family-association