Trustee – Dravet Syndrome UK
Location
London and UK
Where the role is based
Remote and London
Travel limit
We would suggest you love within the M25 however this is not a stipulation and is ultimately at the discretion of the candidate
Application deadline
31st August 2017
Opportunity type
Dravet Syndrome UK is seeking a Trustee to help provide support to our other Trustee’s and small team of three. Ideally you will come from a professional Medical or Corporate background and an interest in getting involved with a small (but perfectly formed!) charity to help us manage our strategy and approach in these areas, with a steer on supporting our research applications.
Opportunity description
Working with a small charity dedicated to supporting our growing database of around 500 families across the UK living with Dravet syndrome, a catastrophic condition.
Dravet syndrome is a rare and severely disabling type of ‘epilepsy syndrome’ affecting approx. 1,19:000. Epilepsy is just one aspect. Dravet syndrome; there are various other health conditions and symptoms including autism, ADHD and ataxia. Those with Dravet syndrome are particularly prone to status epilepticcus, From the second year onwards a child’s development slows down or regresses, sometimes severely. Those living with Dravet syndrome live with the risk of SUDEP (Sudden Unexpected Death in Epilepsy).
The role
A Trustee would join our Board of Dravet Syndrome UK operates on a national level and is made up of a team of trustees and five world-renowned professional advisors. This small team work very closely together to ensure we meet the needs of families affected by Dravet syndrome, whilst working with professionals in the field of neurology on research projects.
Dravet Syndrome UK are extremely fortunate to have a dedicated team of volunteer trustees. Each trustee brings with them different experiences and knowledge. The trustees meet in person at least twice a year to discuss the aims of the charity and ensure they are being fulfilled in an efficient, appropriate and transparent manner. Without the dedication and hard work of each trustee Dravet Syndrome UK could not operate.
What you will get in return for your efforts:
•Make a real and significant difference for people and families living with a catastrophic condition people
•work with a small, dedicated and enthusiastic, professional and caring team
•develop your own skills and experience
•bring added value and experience to a progressive charitable organisation
•Feel a real and genuine sense of reward and achievement
•Be involved with cutting edge research projects and reaching out to the corporate
community
Required skills
Medical, Research, corporate, strategy, networking, management
Person description
To thrive in the role we are looking for an exceptional individual looking to dedicate a minimum of 5 hours to work on with our existing Trustee team on the Trustee Board, ideally with:
•Keen to work within a small team
•Interest in supporting a community, family oriented charity with outreach, awareness and funding for research
•An existing contact network of influencers within the corporate/business community
•Professional medical experience or knowledge advantageous
What impact the opportunity will have
Your impact on our existing charity strategy will be direct, evident and impactful both in supporting our charity Trustee Board and our Dravet syndrome community in the UK.
Ultimately your contribution will be for you to determine but we hope it will be reasonable for your time and significant in its impact toward our mission and strategy.
What’s in it for the volunteer?
A chance to give something back and get involved with a wonderful team and community of individuals and their families who are experiencing challenging lives with Dravet syndrome.
In 2018 we celebrate our 10 year anniversary, so this opportunity will see you join us at a pivotal moment in our history to drive forward our plans and strategy to help us develop and sustain the ability to fund research projects and support our community of families.
Time commitment
Remote working, as with all of our team with the possible option to meet with other charity members with advance notice in London.
Trustee meetings are held twice a year, with a further two team meetings if possible.
Ideally a minimum time availability of 5 hours per week to support the charity chair and small team of three staff deliver our strategy across community support incentives, corporate outreach and management of research/medical projects.