February 2019

 

ADVERT: Head of Research

35 hours per week, home based with regular travel within UK

 

This is an exciting opportunity for a talented and motivated individual to shape the TSA’s research portfolio and build strong working relationships with potential research partners and funders.  You will work closely with the Chief Executive and Chair of the Research Committee to manage and expand our existing research commitments. You will develop and deliver a new approach to driving investment in TSC research through joint working with partners and funders. You will provide leadership for new projects seeking to fund and establish a UK TSC registry and work more effectively with the network of NHS TSC clinics across the UK. You will work with colleagues from across the globe to develop and deliver the 2020 International Scientific Conference which will take place in London. You will provide strong support for the research team during a period of change. 

The TSA has a five-year organisational strategy for 2019-2023 to REACH more people and drive more REsEarCH, and a new research strategy for the same period (www.tuberous-sclerosis.org). We have identified key strategic projects to drive the research agenda by improving outcomes and quality of life for people living with TSC, including: a new approach to driving investment in TSC research through joint working; and establishing a UK TSC registry. Your role is key to delivering this strategy.

If you would like an informal discussion about this post, please email the TSA’s Chief Executive Louise Fish at louise.fish@tuberous-sclerosis.org or call 07786 390101.

 

The closing date for applications is 5pm on Monday 11 March and interviews will be held in London during w/c 18 March. To apply, please send a CV and short covering note to louise.fish@tuberous-sclerosis.org.

 

About Tuberous Sclerosis Complex (TSC)

TSC is a genetic condition that can lead to growths in various organs of the body. It is a rare condition affecting between 3,700 and 11,000 people in the UK. The organs most commonly affected by growths are the brain, eyes, heart, kidney, skin and lungs. These growths may be referred to as benign tumours but they are not cancerous. When they cause problems it is mainly because of their size and where they are in the body.

 

Eight out of ten people living with TSC have epilepsy. One in every two people have learning disabilities such as intellectual impairment and problems with attention and memory. Many people living with TSC also have behavioural problems such as autism, ADHD, aggression, depression, anxiety and sleep disorders which can have a serious impact on family life.

 

There is a wide range of severity in TSC. Some people living with TSC are so mildly affected that they experience few problems. Other people living with TSC can be severely affected and need life-long support from their families, or live in residential care.

 

About the Tuberous Sclerosis Association (TSA)

The TSA is the only UK charity dedicated to supporting people living with TSC and their families.  Our vision is a world where TSC and its effects are conquered. Our mission is to provide help for today and a cure for tomorrow. Our aims are to: make a positive impact on the health and wellbeing of people living with TSC, their families and carers; lead research into the tools, technologies and treatments which eliminate the effects of TSC; and lead innovation in the integration of medical and social care services. You can find more information at www.tuberous-sclerosis.org.


Job description: Head of Research

 

Reports to: Chief Executive

Responsible for: Research and Evidence Officer, Clinics and Registry Manager (grant-funded, new post, fixed term two years)

 

Location: Home based, with regular travel within the UK

Hours of work: 35 hours per week (flexible arrangements possible)

Salary: Up to £35,000

Pension: Non-contributory pension scheme (after six months’ employment)

Holiday: 25 days annual leave, plus 8 bank holidays

Notice period: One month

The role of the Head of Research

You are a talented and motivated individual who will shape the TSA’s research portfolio and build strong working relationships with potential research partners and funders.  You will work closely with the Chief Executive and Chair of the Research Committee to manage and expand our existing research commitments.  You will develop and deliver a new approach to driving investment in TSC research through joint working with partners and funders.  You will provide leadership for new projects seeking to fund and establish a UK TSC registry and work more effectively with the network of NHS TSC clinics across the UK.  You will work with colleagues from across the globe to develop and deliver the 2020 International Scientific Conference which will take place in London.  You will provide strong support for the research team during a period of change. 

Responsibilities

1.       Strategy and research commitments

1.1             Implement the TSA’s 2019-2023 research strategy which identifies clear research priorities including: earlier diagnosis; early risk assessment; basic science and pre-clinical work; prevention; research into new and available therapies; and social and service research. 

1.2             Regularly review and update the TSA’s research strategy to ensure it remains current.

1.3             Administer and manage the TSA’s research grants portfolio, delegating work to and supporting the Research and Evidence Officer where appropriate.  This includes:

  • Managing grant application processes relating to the TSA’s research award rounds as and when funding becomes available to deliver them.
  • Providing strong administrative and financial oversight for existing research commitments in the TSA’s research grants portfolio, including a programme of annual reviews for each project.
  • Monitoring and evaluating the outcomes of TSA funded research to learn from each project and determine its contribution to improving clinical outcomes and/or quality of life for people living with TSC.
    • Scoping and supporting new research projects that are proposed by academics, healthcare professionals or funders, and putting together proposals for review and sign off by Rescom and/or the Board.

1.4             Provide an effective and timely secretariat for the TSA’s Research Committee (Rescom) and supporting the Chair of the Research Committee when needed.

1.5             Build strong working relationships with academics, healthcare professionals and funders who are part of the TSC research community in the UK and overseas.

2.       Partnership working

2.1             Carry out desk research and network with Association of Medical Research Charity (AMRC) peers to identify best practice models of partnership working that are delivering strong research portfolios for other medical research charities.

2.2             Design and implement a bold and ambitious partnerships programme that enables the TSA to accelerate progress  towards delivering our five-year research strategy.

2.3             Identify and secure new strategic research partnerships by liaising and networking with external organisations including medical research charities, academic institutions, commercial partners, government agencies and major funders of research.

2.4             Transform initial discussions about opportunities for partnership working into operational, collaborative research agreements and joint funding applications, managing relevant projects against agreed milestones to drive investment in TSC research.

2.5             Maintain and build strong relationships with existing partners, identifying opportunities to expand these or mirror successful models with other partners.

2.6             Represent and promote the TSA’s work in the research space to external parties such as medical research charities, academic institutions and major funders of research through visits, presentations and attendance at appropriate meetings and conferences.

2.7             Organise an annual Research Open Day to showcase the TSA’s portfolio of research and future opportunities for partnership working to potential partners and funders.

2.8             Work closely with the Chief Executive to scope, deliver and sign off a new research investment strategy that identifies opportunities to apply for funds – either alone or in partnership – to deliver each element of the TSA’s five-year research strategy.

2.9             Monitor and analyse external developments in the research partnership and funding environment with an awareness of developments that may impact on the TSA.

3.       UK TSC Registry

3.1             Work closely with the Head of Income Generation to develop a strong ‘case for support’ for a strategic project to fund and establish a UK TSC Registry, including securing funding towards a two-year fixed term post of Clinics and Registry Manager.  This new post will act as a catalyst bringing together organisations from across academia, the NHS and industry to determine the best way to develop and deliver a UK TSC Registry.

3.2             Work with the Clinics and Registry Manager to develop and deliver a new strategy for funding and establishing a UK TSC Registry that will collect uniform data about people living with TSC in a centralised database. 

3.3             Provide real world support and advice to ensure the UK TSC Registry delivers tangible benefits for people living with TSC, healthcare professionals who support them, academic researchers and industry partners.

4.       NHS TSC Clinics

4.1        Work closely with the Head of Income Generation to develop a strong ‘case for support’ for a strategic project to engage consistently with all NHS TSC Clinics across the UK, including securing funding towards a two-year fixed term post of Clinics and Registry Manager which will develop and embed this new approach in the TSA’s day-to-day practice.

4.2        Work with the Clinics and Registry Manager to develop and deliver a new strategy for engaging consistently with all NHS TSC Clinics across the UK, so that the TSA can support those running the clinics and engage with patients and families who are newly diagnosed or identified through the clinics. 

4.2        Work with the Clinics and Registry Manager to design and deliver an annual TSC Clinics Day for clinic leads and clinic administrators that brings everyone together to share best practice and develop solutions to collective challenges.

4.3        Act as a senior point of contact for healthcare professionals leading TSC clinics, working alongside colleagues to build credibility with new clinics or those where we do not yet have a strong working relationship

5.       2020 International Scientific Conference

3.1          Provide leadership and oversight for the 2020 International Scientific Conference, working closely with the Research and Evidence Officer who will organise the event.  This will include: 

  • Identifying a suitable conference venue, an outline programme and themes, and a list of proposed invited speakers.
  • Working with the Chief Executive and Head of Income Generation to develop a sponsorship package for the event and approach prospective sponsors.
  • Ensuring a suitable process is in place for abstract submission and assessment to identify potential speakers and poster presentations.
  • Reviewing and signing off invitations, agenda outlines, joining instructions and delegate feedback forms.
  • Ensuring a suitable process is in place for managing delegate bookings via online booking platforms and the charity’s CRM
    • Reviewing and signing off a risk management assessment for the event.
    • Reviewing and approving a budget for the conference and tracking spend against the budget.
    • Putting in place a suitable process for delegate feedback and reviewing and signing off a post-event report.
  • Providing a secretariat for the Conference Scientific Committee and the Conference Working Committee.

6.       Leadership and management

6.1             Provide leadership for the research team through regular meetings, project groups to develop new projects, policies and procedures, and ad hoc support when members of the team are facing challenging or complex issues.

5.2        Line manage team members through regular 1-2-1s and annual personal development reviews (these can be face to face or by teleconference as agreed with each line managee).

5.3        Lead on strategy development for the research team.

5.4        Lead on the annual business planning and budget cycle for the research team.

5.5        Attend and actively contribute to weekly TSA management team teleconferences and monthly face-to-face meetings at the TSA’s London head office.

Other requirements of the post

 

The post holder must be prepared to work flexibly to meet the needs of the organisation.  This will entail occasional evening and weekend work.  Regular travel within the UK will be needed for team meetings in London and networking events with external partners and potential funders.  This would normally require access to a car (mileage will be paid) or travel by public transport (tickets will be paid).

 

A DBS enhanced disclosure will be required prior to taking up post.

 

Person specification

 

Essential

  • Experience of providing strong management and financial oversight for a research portfolio
  • Experience of providing advice and support to senior academics, healthcare professionals and decision-making committees
  • Experience of building and managing relationships with a range of senior stakeholders in the charitable, academic, commercial and research funding sectors
  • Proactive, strategic thinker who can spot opportunities and transform them into operational plans
  • Good analytical skills and the ability to grasp and analyse complex information
  • Demonstrable initiative and ability to see projects through to completion at a high standard
  • Able to work with people with a wide range of abilities, with a warm, empathetic style
  • Ability to work to deadlines and appropriately prioritise competing deadlines
  • Strong time, budget and project management skills
  • Ability to build trust and work discreetly with confidential and sensitive academic and commercial material
  • Excellent relationship building and stakeholder management skills
  • Self-motivated with ability to plan, prioritise and manage own workload
  • Understanding of the significance of registries and the benefits they generate
  • Understanding of the NHS and ability to understand and work with clinics
  • Educated to scientific first degree level

Desirable

  • Experience in the health or social care sector
  • Experience of working with people living with rare diseases, learning disabilities or autism
  • Educated to scientific PhD level or equivalent experience


February 2019

 

ADVERT: Events and Communications Assistant

35 hours per week, office based (London)

 

This is an exciting opportunity for an enthusiastic team player with fantastic project and time management skills and a passion for working with individuals and families with rare diseases, learning disabilities or autism.  You will coordinate around 12 events each year, including: our annual community event Big Day, to share information with people living with TSC and their families; our Outlook event, bringing together individuals with mild and moderate TSC; a Family Fun Day so younger families can socialise and network; one event each in Scotland, Wales and Northern Ireland; and four high-profile fundraising events.  You will organise quarterly webinars for health, social care and education professionals.  You will draft and publish content for the website, social media and our magazine, Scan.  You will deliver a new community engagement strategy including support for a community forum and renewed ambassadors group. 

The TSA has a new five-year strategy for 2019-2023 to REACH more people and drive more REsEarCH.  We have identified key strategic projects including: bringing people together at high quality events; reaching more people with online information through our website and social media; and stronger community engagement.  Your role will be key to delivering this strategy.

If you would like an informal discussion about this post, please email the TSA’s Chief Executive Louise Fish at louise.fish@tuberous-sclerosis.org or call 07786 390101.

 

The closing date for internal applications is 5pm on Monday 11 March and interviews will be held in London during w/c 18 March.  To apply, please send a CV and short covering note to louise.fish@tuberous-sclerosis.org.

 

About Tuberous Sclerosis Complex (TSC)

TSC is a genetic condition that can lead to growths in various organs of the body.   It is a rare condition affecting between 3,700 and 11,000 people in the UK.  The organs most commonly affected by growths are the brain, eyes, heart, kidney, skin and lungs.  These growths may be referred to as benign tumours but they are not cancerous.  When they cause problems it is mainly because of their size and where they are in the body.

 

Eight out of ten people living with TSC have epilepsy.  One in every two people have learning disabilities such as intellectual impairment and problems with attention and memory.  Many people living with TSC also have behavioural problems such as autism, ADHD, aggression, depression, anxiety and sleep disorders which can have a serious impact on family life.

 

There is a wide range of severity in TSC.  Some people living with TSC are so mildly affected that they experience few problems.  Other people living with TSC can be severely affected and need life-long support from their families, or live in residential care.

 

About the Tuberous Sclerosis Association (TSA)

The TSA is the only UK charity dedicated to supporting people living with TSC and their families.  Our vision is a world where TSC and its effects are conquered.  Our mission is to provide help for today and a cure for tomorrow.  Our aims are to: make a positive impact on the health and wellbeing of people living with TSC, their families and carers; lead research into the tools, technologies and treatments which eliminate the effects of TSC; and lead innovation in the integration of medical and social care services.  You can find more information at www.tuberous-sclerosis.org.


Job description: Events and Communications Assistant

 

Reports to: Head of Communications and Engagement

Location: Office based (London) with regular travel within the UK

Hours of work: 35 hours per week (flexible arrangements possible)

Salary: Up to £20,000

Pension: Non-contributory pension scheme (after six months’ employment)

Holiday: 25 days annual leave, plus 8 bank holidays

Notice period: One month

The role of the Events and Communications Assistant

This is an exciting opportunity for an enthusiastic team player with fantastic project and time management skills and a passion for working with individuals and families with rare diseases, learning disabilities or autism.  You will coordinate around 12 events each year, including: our annual community event Big Day, to share information with people living with TSC and their families; our Outlook event, bringing together individuals with mild and moderate TSC; a Family Fun Day so younger families can socialise and network; one event each in Scotland, Wales and Northern Ireland; and four high-profile fundraising events.  You will organise quarterly webinars for health, social care and education professionals.  As well as leading on event management, you will help to engage with internal and external stakeholders in a number of ways, including: drafting and posting content on our website and social media and coordinating content/drafting articles for our magazine, Scan, which is produced three times each year.  You will deliver a new community engagement strategy including support for a community forum and renewed ambassadors group. 

Responsibilities

1.       Events

1.1        Organising around 12 events each year.  For each event, this will include:

  • Identifying and booking a suitable venue and related items (such as AV, catering and printing).
  • Developing an outline agenda based on input from the senior management team.
  • Inviting speakers and liaising with them to secure their biographies and presentations.
    • Drafting, proofing and publishing copy on the TSA website, online and in Scan magazine to raise awareness of the event and drafting copy for event guides.
  • Drafting, proofing and distributing invitations, agenda outlines, joining instructions and delegate feedback forms.
  • Managing delegate bookings via online booking platforms and the charity’s CRM
    • Dealing with event-related queries from trustees, staff, speakers and delegates by phone and email.
    • Liaising with hotels over room bookings for trustees, staff and speakers.
    • Coordinating expense claims from trustees, staff and speakers.
    • Liaising with external suppliers including those providing audio visual and creche services where required.
    • Ensuring that a risk management assessment is in place for each event, with support and sign off from the senior management team.
    • Drafting a proposed budget for the event and tracking spend against the budget.
    • Preparing badges, event guides and delegate packs for events.
    • Attending and project managing the events on-site, including on some weekends.
    • Collating delegate feedback and producing post-event reports.
    • Providing administrative support for remote project teams for larger events such as the Big Day, Outlook and Family Fun days.

2.       Content

2.1        Drafting content for the TSA’s social media channels, including Facebook, Twitter, Instagram and LinkedIn.

2.2        Monitoring social media channels for engagement with external stakeholders and liaising with team-members appropriately.

2.2            Working closely with the Head of Communications and Engagement to review and strengthen our engagement with the TSC community through social media, particularly with the TSC Mums and Dads and Outlook groups on Facebook.

2.3         Drafting, proofing and publishing content on the TSA website.

2.4         Drafting articles for Scan magazine and proofing content when needed.

2.4.1         Filming and capturing events as they happen and editing them for appropriate distribution post-event.

3         Community engagement

3.1        Support the development and delivery of a new community engagement strategy including an annual community forum event, a renewed ambassadors group, support for Facebook groups, peer-to-peer buddy networks and legacy issues including volunteers and groups.

4         General

4.1        Attend and actively contribute to weekly TSA all staff teleconferences and bi-annual face-to-face staff away days.

4.2        Undertake other duties which are compatible with the functions of the post.

4.3        Responsible for the accurate processing and storage of data associated with events and engagement activities.


Other requirements of the post

The post holder must be prepared to work flexibly to meet the needs of the organisation.  This will entail some evening and weekend work to support community events such as the Big Day, Outlook and Family Fun Day.  Regular travel within the UK will be needed to identify venues and attend events.  This requires access to a car (mileage will be paid) or travel by public transport (tickets will be paid).

 

A DBS enhanced disclosure will be required prior to taking up post.

 

Person specification

 

Essential

  • Experience of coordinating and working at events for up to 150 people
  • Customer oriented approach when managing events
  • Able to work and engage with people with a wide range of abilities with a warm, empathetic style
  • Excellent understanding of social media management and digital communications
  • Strong filming and photography skills
  • Demonstrable writing skills with a good eye for accuracy and the ability to draft concise content
  • Background in working with third-party vendors and agencies on projects
  • Ability to work to deadlines and appropriately prioritise competing deadlines
  • Excellent time, budget and project management skills
  • Self-motivated with ability to plan, multi-task and manage own workload
  • Strong team player with ability to work with and support others
  • Ability to cope well under pressure
  • Experience of working with databases and Microsoft Office packages
  • Educated to degree level or equivalent

Desirable

  • Personal or professional experience of supporting/working with individuals and families living with rare diseases, learning disabilities or autism
  • Experience in the health or social care sector