cysticfibrosis.org.uk Chair of Trustees Cystic Fibrosis Trust Application pack Fighting for a

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1 cysticfibrosis.org.uk Chair of Trustees Cystic Fibrosis Trust Application pack Fighting for a Life Unlimited

2 The Cystic Fibrosis Trust is on an extraordinary journey to transform the lives of people with cystic fibrosis today, we have a unique opportunity to make a step-change in our mission to beat the condition for good. A pipeline of game-changing precision drugs is bringing real hope for the future, and developments in digital technology are offering the prospect of reshaping care to empower people with CF to improve their health and wellbeing and live lives unlimited by their condition. The Trustee Board is focussed on making change happen: we have a refreshed leadership team under our new Chief Executive, David Ramsden, and a fantastic UK-wide team of staff, volunteers and fundraisers. We are now looking for a new Chair with the skills, experience and passion to make a real difference. During my term the Trust has relocated to the vibrant heart of London, we have rebranded, overhauled our governance and Board processes, are financially sound and have a strong Board with great skills and a great dynamic. We have a new CEO and refreshed top team ready to deliver. Can you lead the Board from now on? Are you a rounded, worldly individual, passionate about your roles, well-networked and connected? If the answer is yes, please make contact now Dr David Lawson, Chairman of the Trust, is one of the first to suggest using early and continuous antibiotic treatment for Staphylococcus aureus The Cystic Fibrosis Trust is formed (as the Cystic Fibrosis Research Foundation Trust). Yours sincerely, George Jenkins OBE Chair of Trustees I started working for the Trust in December 2016, and I have joined the organisation during at a critical time for everyone in the CF community. Advances in science and understanding have put us in an unprecedented position. People are living longer and healthier lives, and we are closer than ever to ensuring that this becomes a reality for everyone in our community. As Chair of Trustees, you will ensure the Trust continues to be a dynamic and innovative organisation, oversee our strategic direction and make sure that we continue to deliver results that put people with CF at the very centre of everything that we do The Trust begins funding the first specialist doctors in the UK. Yours sincerely, David Ramsden Chief Executive

3 What is cystic fibrosis? Most people don t understand what cystic fibrosis is until someone close to them is affected by it. They soon discover it s a life-shortening genetic condition that slowly destroys the lungs and digestive system. There are over 10,800 people living with cystic fibrosis in the UK, and more than two million of us carry the gene that causes cystic fibrosis, most without knowing it. Cystic fibrosis is a lifelong challenge that involves a demanding daily burden of vast intakes of drugs and time-consuming physiotherapy, just to stay healthy. What is the Cystic Fibrosis Trust? The Trust was founded in We have a clear mission: to beat cystic fibrosis for good. We are fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. 1 in The CFTR gene that causes cystic fibrosis is discovered. of us carries the faulty gene that causes cystic fibrosis 5 babies are born with the condition each week 2 people a week lose their lives to cystic fibrosis 1993 The first classification of CF mutations by Dr Michael Welsh, assisted by Dr David Sheppard 1998 The first Sixty-Five Roses Ball takes place to date it has raised over 700,000.

4 What s our direction? A great deal has changed in the 50 years since the Trust was founded. In % of people with cystic fibrosis died before the age of 10. Today there are more adults with the condition than children, and most are in education, training or employment. But our mission is far from over: still only around half of the people with cystic fibrosis in the UK today will live to celebrate their 47th birthday. That is why we are taking a new strategic direction The Trust founds the UK CF Gene Therapy Consortium. We Five will strategic achieve priorities our mission will of direct a life unlimited all of our by activity cystic fibrosis towards by: achieving our mission of a life unlimited by cystic fibrosis. 1. Delivering the highest quality research 1. Empowering young lives 2. Delivering great flagship programmes 2. Supporting breaths for life 3. Making Supporting ambitions great care possible and wellbeing Changing Providing lives great through information, transformational support and treatments assistance 5. Harnessing the power of knowledge 5. Empowering and advocating for our community The first marker on our horizon is 2020, by which time we want to be: "As both a Trustee and a parent of a young boy with cystic fibrosis, I know how helping people with CF live life to the full; empowering young people with CF to enjoy an adolescence as a time of growth and opportunity; trail-blazing in cutting-edge research and enabling vital swift access it to is transformational that we therapies; reach and identifying the path to a cure for cystic fibrosis. our goal. Hannah Begbie, Former Trustee Trustee and parent and parent "As both a and a parent of a young boy with cystic fibrosis, I know how vital it is that we reach our goal. Hannah Begbie, Trustee and parent 2006 The Trust launches the peer review programme to look at standards of care Cystic fibrosis becomes part of the compulsory heel-prick test at birth, after campaigning by the Trust The UK CF Registry is launched, which today contains 99% of the people with CF in the UK.

5 2013 The groundbreaking drug ivacaftor is made available in all UK nations following campaigning by the Trust HRH The Prince of Wales becomes Patron in the Trust s 50th anniversary year The Trust announces funding for three pioneering Strategic Research Centres The Trust launches the Life Unlimited vision with a bold public campaign.

6 cysticfibrosis.org.uk Cystic Fibrosis Trust Registered as a charity in England and Wales ( ) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.

7 cysticfibrosis.org.uk Role description Chair of Trustees As well as the responsibilities of being the Chair, the role of Chair of Trustees also incorporates the responsibilities of a Trustee. Please read the following duties and responsibilities for both roles. Trustee The purpose of the role of Trustee is to be responsible as part of the Board of Trustees for the overall governance and strategic direction of the charity, developing the organisation s aims, objectives and goals in accordance with the governing document and legal and regulatory guidelines. Statutory duties: To ensure that the Cystic Fibrosis Trust complies with its governing document, charity law, company law and any other relevant legislation or regulations. To ensure that the Trust pursues its objectives as defined in its governing document. To contribute actively to the Board of Trustees role of giving firm strategic direction to the organisation, setting overall policy, defining goals, setting targets and evaluating performance against agreed targets. To ensure that the organisation uses its resources exclusively in pursuance of its objectives the organisation must not spend money on activities which are not included within its own objectives, no matter how worthwhile or charitable those activities may be. To safeguard the good name and values of the Trust. To ensure the effective and efficient administration of the organisation. To ensure the financial stability of the Trust. Chair In addition, the specific responsibilities of the Chair are as follows: To lead the Trustee body in ensuring that it fulfils its responsibilities for the governance of the organisation by ensuring that the charity acts in accordance with its constitution and by managing its activities. To chair regular meetings of the Board of Trustees, agreeing the agenda with input from the Chief Executive and the Company Secretary. To work in partnership with the Chief Executive, helping him or her to achieve the mission of the organisation. To promote the interests of the Cystic Fibrosis Trust across all parties in its constituency including maintaining outside contacts with Government and, with the Chief Executive, act as a spokesperson for the Trust. To ensure that the Board of Trustees is kept properly informed on all important matters, including senior executive remuneration, corporate governance and strategy. To ensure that strategies, plans and policies are initiated for agreement by the Board of Trustees, and that such plans are put into effect by the Chief Executive. To ensure that the performance of senior executives and the Board of Trustees as a whole, and its committees, is evaluated on a regular basis. To ensure, in conjunction with the Nominations & Development Committee, the appropriate membership of the Board of Trustees, with particular reference to long-term succession and balance of skill sets.

8 To make recommendations to the Board of Trustees on appointments to the Board s committees, ensuring that committee membership is refreshed from time to time and that undue reliance is not placed on a particular individual. To be available for discussion with any member of the Board of Trustees, act as the Trust s arbitrator on internal differences of opinion and maintain contact with the Chief Executive. To promote constructive relations between the Chief Executive and the Trustees and chair at least one meeting per year attended only by Trustees to discuss the Chief Executive s appraisal and remuneration. Other duties In addition to the above duties, Trustees, including the Chair, should: Be an ambassador and advocate for the Trust. Be willing and able to use any specific knowledge or experience he or she may have to help the board of trustees reach sound decisions. This will involve scrutinising board papers, leading discussions, focusing on key issues and providing advice and guidance requested by the board or the Chief Executive in areas where the Trustee might add value and insight to deliberations. Follow the Governance Manual and current best practice on being a Trustee at all times. Be an active member of the Trustee body in exercising its responsibilities and functions, and attend meetings faithfully. Maintain good relations with the staff team. Sit on appraisal, recruitment and disciplinary panels as required. Person specification Genuine interest in the vision and purpose of the charity, with a commitment to people living with cystic fibrosis and an interest in extending their own knowledge of cystic fibrosis. A willingness to devote time and effort. Strategic vision. Good, independent judgement. Ability to chair the Board and other committees meetings as appropriate. Ability to promote the Trust and the needs of people living with cystic fibrosis to a range of external stakeholders, including influencing their behaviour. An understanding and acceptance of legal duties, responsibilities and liabilities of Trusteeship. An ability to work effectively as a member of a team while contributing his/her own viewpoint. A commitment to Nolan s seven principles of public life: selflessness, integrity, objectivity, accountability, openness, honesty and leadership.

9 cysticfibrosis.org.uk How to Apply Application is by CV and a covering letter, explaining how you fit the brief, as much as why Cystic Fibrosis specifically appeals to you. To apply online (preferred), please visit and click on the apply button at the bottom of the page, following the instructions that appear. Please note that your application should be no more than two separate documents in order to use the online application system. If you are unable to apply online, please your application to 66121@odgersberndtson.co.uk or post a hard copy to: Julia Oliver Odgers Berndtson 20 Cannon Street London EC4M 6XD Please quote reference: Further information and queries If you would like to have an informal conversation before submitting your application, please contact: Julia Oliver and Nadia Caro on Timetable Closing date: 26th March 2018 Cystic Fibrosis Trust Registered as a charity in England and Wales ( ) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.