On the hunt for a Treasurer!

Trustee Treasurer Vacancy

Alström Syndrome is an ultra-rare genetic syndrome that affects less than 1 in 500,000. Alström Syndrome UK (ASUK) is a patient led organisation that supports those living with the condition, their families and those working with them. Alström syndrome is a complex and life limiting condition, it causes multiple issues; visual loss, loss of hearing, heart, liver and kidney problems. Most children will lose their sight and hearing.

ASUK is a small and dynamic charity focussed on supporting people and families, acting as a catalyst for research and digging deep to improve knowledge and understanding to improve the treatment and management of Alström Syndrome.

ASUK is moving into its next phase of development reaching out to all families and extending its’s international reach.

The board are keen to recruit a new Treasurer to help fulfil ambitious plans and to support the overall mission and strategy.

Role Description

We are looking for someone who would relish the opportunity to become Treasurer, to compliment and expand the range of skills within the current Trustee team. We are looking for someone who is committed and motivated and who can bring their strength, energy, insight, and expertise alongside strategic vision, to fulfil this voluntary role.

We welcome individuals with previous Trustee experience; however, we also welcome those whose career path or caring responsibilities have provided the expertise we are looking for. We aim to always be representative of the diverse population we support.

We are particularly keen to hear from those who have financial management experience, this doesn’t have to be formal training but could be someone who understands figures, spreadsheets, and has an eye for detail.

What can you expect?

• A unique opportunity to use your experience to champion one of the rarest syndromes in the world, help expand our reach and make a difference to people’s lives.
• A supportive team, whose common goal is to further the insights into this condition and improve the lives of those affected.
• To attend around 4 Board meetings per year (held virtually), alongside virtual Financial Committee meetings and 2 face to face Board meetings a year (currently at the weekend in Birmingham). Please note there are no Face-to-Face meetings at the moment.
• Contribute advice and support at quarterly board meetings. These are usually held virtually in the evening.
• Attend the Alström Syndrome UK conference and AGM (held once a year).

This is a voluntary position although all reasonable expenses are paid (in line with our expenses policy).

You can download a statement for our Chair, Trevor Parkin HERE

How to apply
If you relish a challenge and want to help others, we would love to hear from you; tell us about yourself, the experience you can bring and more importantly why you would like to be involved in this unique charity.

We’re keen to get a new Treasurer on board as soon as we can to help with our ambitious plans. So please get in touch to introduce yourself and we will send you further information.

If you would like an informal discussion first, please email Catherine Lewis or call her on 07970 071675 in the first instance, and she will help to organise a call with Trevor Parkin Chair or Alex Griffiths-Rayson Vice Chair.

Alternatively, please get in touch with Catherine and send your information alongside a brief CV via email to catherine.lewis@alstrom.org.uk

Please note-This role will require a Disclosure and Barring Service (DBS) check to be undertaken.

If you would like information in any other format, please contact Catherine.