We are recruiting!

To support the growth and ambitions of UKIST, we’re excited to announce the expansion of our Board of Trustees! UKIST was founded in 2017, and in just 3 years we’ve grown from strength to strength. We’re making great progress towards improving awareness, we’re helping more than 1100 members in our support group, and we continue to dream big! To deliver this, we’re now searching for new Trustees to join our team and drive the charity forwards into its next phase of development. These voluntary positions are incredibly rewarding on many levels, and you can find out more in the attached role spec. If you’ve any queries before applying or would like to find out more about these opportunities from one of our current Trustees, please let us know. The closing date for applications is Friday 28 February.


In 2017, a passionate group of like-minded parents with children affected by infantile spasms established the UK Infantile Spasms Trust (UKIST), with three clear aims:

  • To improve awareness of the symptoms of infantile spasms amongst the medical profession and the public, because early diagnosis is key;
  • To provide a vital network of support to parents and carers with children affected by infantile spasms; and
  • To support the advancement of clinical research into infantile spasms.

To support the growth of the charity, we’re now looking to broaden the skills and diversity of our Board of Trustees. We’re particularly keen to hear from people with skills, knowledge and expertise in the following areas: medicine (to extend our reach in to the Doctor and Health Visitor communities); fundraising (to focus on income generation and supporter engagement); digital / social media / marketing (to further improve awareness and support); and administration (to drive our day-to-day effectiveness).

Being a UKIST Trustee will ensure the charity delivers on its ambitions, both today and in the future. On a personal level, the Trustee role will give back just as much as you put in and often much, much more. No matter what career stage you’re at, this role is a great way to build personal / professional skills and connections, whilst empowering you with a new sense of purpose.

Duties & Responsibilities

  • Shape the future strategy and ambitions for UKIST.
  • Ensure the charity’s activities are fully aligned to its purpose and goals.
  • Act in the best interests of UKIST and manage the charity’s resources responsibly (including
  • annual budget setting and prioritisation of expenditure).
  • Act as an ambassador of the charity; representing the needs and experience of children affected
  • by infantile spasms.
  • Provide support as appropriate through our online support group and network of Regional Parent
  • Ambassadors.
  • We encourage active participation. Your minimum time commitment in an average year is likely
  • to be 6 days. This includes bi-monthly teleconference calls (typically 30-60 mins, evenings) and
  • an Annual General Meeting (weekend, city centre location). Most duties will be flexible around your other commitments.
  • The initial term of office is for 3 years, with the potential to be reappointed for a further 3 years.

Skills, knowledge & experience

  • Understanding of the role and responsibilities of a charity Trustee (see Charity Commission)
  • A demonstrable understanding of UKIST’s aims, values and work
  • Personal experience of childhood epilepsy / infantile spasms (desirable)
  • Experience of working collaboratively in a small and remote team
  • A specialist area of skill / knowledge / experience that would support the charity’s ambitions (essential, as detailed above)
  • IT literate – including regular use of emails, MS Word, and Facebook (essential)

Personal qualities

  • Passionate about UKIST’s work and a willingness to give up personal time to help run it
  • Proactive in taking ownership for tasks and activities required
  • Excellent interpersonal and relationship-building skills
  • Strong communication skills with the ability to listen and engage effectively
  • Enjoys working in a collaborative team environment
  • Able to challenge constructively and positively, where appropriate
  • A strong personal network with the ability to reach out and think creatively
  • Able to act with integrity and in the best interest of UKIST

How to apply

If you’re excited by this opportunity, please send a CV and short covering letter explaining how you believe your skills and experience match the requirements to ukinfantilespasmstrust@gmail.com, by Friday 28 February. If you’ve any queries before applying or would like to find out more about the role from one of our current Trustees, please let us know.

Note: Trustees need to meet the requirements of the charity’s governing document and UK law. In line with the Charity Commission regulations no payment will be made for these positions, but all expenses will be reimbursed. You can find out more about infantile spasms and the work UKIST is doing on our website (https://ukinfantilespasmstrust.org); and we’d love for you to follow our Facebook group (www.facebook.com/UKInfantileSpasmsTrust).