The BDFA is seeking a new Volunteer Treasurer/Trustee to join our passionate and dedicated Board.
As a trustee, you will play a key role in shaping the strategic direction of the BDFA, ensuring strong governance, and helping to improve the lives of children, young people, and families affected by Batten disease across the UK.
The overall role of Treasurer is to maintain an overview of the organisation’s affairs, ensure its financial viability and ensure that proper financial records and procedures are maintained.
As our Treasurer, you will:
- Oversee, approve and present budgets, accounts and financial statements
- Assure that the financial resources of the organisation meet its present and future needs
- Prepare and present financial reports to the Board
- Ensure that appropriate accounting procedures and controls are in place
- Have oversight of and give guidance to BDFA Accounting & Financial Administration Officer
Ideal Background: Fully qualified chartered accountant/financial qualifications and experience. Some experience of charity finance and fundraising.
A full job description is available upon request.
We welcome suitably qualified applicants who share our commitment to inclusion, integrity, and advocacy, and who are willing to contribute their time, skills, and experience to drive meaningful change.
Trustees meet regularly (virtually and occasionally in person) and contribute to board discussions, sub-committees, and strategic projects.
This is a voluntary role, but the personal and social impact is immeasurable.
PLEASE NOTE- THIS IS A VOLUNTEER ROLE
URGENTLY REQUIRED
About us
Batten disease is a very rare genetic disorder that affects the brain and nervous system. Symptoms sometimes begin in infancy and sometimes later in childhood, after apparently normal early development. Occasionally it may start in adulthood. In individuals suffering from Batten disease, nervous system function steadily declines, causing a wide variety of neurologic problems, including loss of vision and seizures. The life expectancy of a child born with Batten disease can vary, depending on the form of the disease and the age of onset. Some children die in early childhood, while others may be able to live into their teens or twenties.
The BDFA was registered as a charity in 2001 and our mission is “to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.” The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.
Pay: From £1.00 per hour
Work Location: Remote
