About Action for ME
Action for ME is the only charity in the UK providing support, including healthcare, to people of all ages affected by ME. The charity was founded by Sue Finlay in 1987 and since then has been taking holistic approach so we can make an impact on multiple fronts - from amplifying the voices of people affected by ME in Government and leading on breakthrough research, to providing "lifeline" support and unique healthcare services on a daily basis.
Myalgic Encephalomyelitis (ME), sometimes referred to and diagnosed as Chronic Fatigue Syndrome (CFS), is a chronic, fluctuating disease, causing symptoms such as post-exertional malaise (PEM), sleep problems, problems with thinking and memory (brain fog), pain and crushing fatigue. There are an estimated 1.3 million people living with ME or ME-like symptoms, including PEM, in the UK alone.
Even in its so-called mildest form, ME can have a significant impact on an individual s life, and not just on their health. A lack of understanding and awareness about ME means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals, employers and teachers.
For the first time there is an increased awareness of post viral illness because of the Covid -19 pandemic. After decades of neglect this offers Action for ME an opportunity to accelerate our work for people with ME in a way we have never been able to do before.
Job Purpose
This is a unique and exciting opportunity to accelerate research and transform the lives of millions of people with ME and Long Covid. We are seeking a Business Development & Partnerships Manager for Sequence ME & Long Covid, a new research initiative designed to explore the root causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing.
By developing and delivering strategic partnerships and funding strategy, you will work as part of team committed to making change happen through whole genome sequencing (WGS) of 18,000 people, the largest ever WGS in the world of any disease.
Sequence ME & Long Covid aims to pinpoint potential targets for treatment and bring us closer to meaningful clinical advances. Led by Action for ME, the partnership includes the University of Edinburgh, Oxford Nanopore Technology (who will provide the long-read technology), the European Bioinformatics Institute (EMBL-EBI) and people with lived experience of ME, who have joined to seek funding for Sequence ME and Long Covid. Together, this multidisciplinary team brings world-class expertise in genomics, bioinformatics, co-production and ME research.
If you have experience of securing significant funding or investment for research, producing high quality communication materials and a commitment to coproduction and lived experience involvement in research or service design, we would like to hear from you.
Key Responsibilities
Partnerships and Business Development
* Develop and deliver a business development strategy for the Sequence ME & Long Covid (SMELC) study to secure £6m funding for the first phase of scientific research (whole genome sequencing of 9,000 already secured samples from people with ME).
* Lead on high level applications for funding to high potential strategic partners and research funding partners.
* Work with the current partnership to mobilise the study and ensure effective plans and governance are in place.
* Maintain and manage a pipeline of partnership opportunities.
Communications and Engagement
* Contribute to engagement and communications activities to market Sequence ME and Long Covid effectively.
* Create materials to support effective engagement with potential and current partners.
* As part of business and partnership development, develop pitch decks and proposals tailored to different audiences.
* Support fundraising efforts by contributing to communications materials for philanthropy and major donor engagement.
* Ensure that people with lived experience remain at the heart of planning and delivery.
Other Key Accountabilities
* To attend Action for ME meetings and courses as required.
* To work collaboratively with Action for ME and the study team colleagues across all teams.
* Keep up to date with the latest research, best practice and comply with relevant legislation and regulatory requirements, working within the organisation s policies and procedures and ensuring that good practice is observed at all times.
* Maintain confidentiality in line with relevant policy and procedure, ensuring data consent processes have been followed in relation to data protection.
* Positively promote the work and activities of Action for ME at all times.
* Undertake any other reasonable activity in line with the responsibilities of the post as requested by the Line Manager or any member of the Management Team.
The full recruitment pack can be found on our recruitment website.