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Page 1 of 9
Stratford-upon-Avon, Warwickshire
£50,000 - £55,000 per year
Permanent, Full-time
Job description

The role

You will provide strong leadership both internally and externally, working with the staff, the Board of Trustees, volunteers, partners and stakeholders to position SMA UK firmly as the SMA Community’s leading charity and voice.

Your key responsibility of developing and driving the strategic plan and vision for SMA UK includes ensuring the ongoing delivery of our support services to the SMA Community; increasing our financial resources through fundraising, partnerships, and campaigns; building public awareness and understanding of Spinal Muscular Atrophy; ensuring the highest standards of governance.

You will also be the lead advocate, spokesperson and liaison for SMA UK engaging with the SMA Community, Regulatory Authorities, Government, Pharmaceutical Companies, Patient Groups, clinicians, media, press and other national and international SMA organisations.

We are committed to safeguarding all children and adults at risk and expect you to share this commitment.

The successful candidate will have:

  • A proven track record in leadership
  • Excellent interpersonal skills with an ability to engage with people from different backgrounds
  • An ability to present people’s views and experiences in ways that will be accessible and capture people’s attention
  • Creative vision and drive to develop new ideas
  • An interest in quality of life for disabled people and a commitment to gaining an in depth understanding of SMA and the challenges faced by people affected by the condition
  • All the qualities of an effective team player with a willingness and ability to work with and across all teams to meet the wider organisation’s objectives.

Diversity and equality of opportunity matter at SMA UK. We want to attract the broadest range of talented people to be part of our team – the more diverse our workforce, the better able we are to respond to and reflect the breadth of our Community. We welcome applications from individuals, regardless of age, gender, ethnicity, disability, sexual orientation, gender identity, socio-economic background.

We’re happy to discuss flexible working. There is no obligation to raise this at the application stage but if you wish to, you are welcome. Flexible working will be part of the discussion at offer stage.

About us

Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (atrophy). This may affect crawling and walking ability, arm, hand and neck movement, breathing and swallowing.

Established for over 35 years, SMA UK is a national charity committed to providing support and services to those impacted by this rare and complex genetic condition. We are also active in funding research into SMA, involved with advocacy for access to drug treatments, and raising public awareness.


SMA UK’s office is in Stratford-upon-Avon with staff living within commuting distance. Volunteers are UK wide. The charity has a good IT infrastructure. Working from home is possible but regular travel to the office and other locations will be required.

Closing date: Friday 14th February. Provisional Interview Date: Monday 1st March.

Additional documents
CEO Job Description (.docx)
Check commute
Starting Address
Mode of transport
More about SMA UK

Welcome to Spinal Muscular Atrophy UK

SMA UK is a national charity committed to providing support and services to th... Read more

Refreshed on: 15 January 2021
Closing date: 14 February 2021
Tags: Communications, PR,Senior Management

The client requests no contact from agencies or media sales.

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