Our vision is that people affected by WM live longer good quality lives, being supported every step of the way by WMUK.
Our goal is to be the informed voice of WM in the UK.
WMUK
Positioning
Be the expert voice of WM
- the most credible leading-edge source
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Ensure WMUK is recognised as aspirational through building reputation and influence
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Be a key player in shaping research plans to ensure patient needs are addressed and outcomes are optimised
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Contribute the patient perspective to all relevant decision-making bodies in the UK
Optimised
Treatment
Harness knowledge, data and evidence to drive equitable access and improve patient outcomes
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Provide robust data to support clinical decision making
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Work with the wider WM ecosystem expertise and systems to improve patient outcomes (research and delivery)
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Deliver the services that will meet the needs of those affected by WM to improve outcomes
Empowered Patients / Engaged Community
Empower patients to live well with WM and support them throughout their WM experience
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Identify and deliver the support patients need to live fulfilled lives
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Work with the wider WM ecosystem to strengthen patient involvement in research and healthcare delivery
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Educate WM healthcare specialists about patient needs
Sustainable
Funding
Be a financially viable organisation with a strong foundation for achieving our goal
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Broaden the funding base to avoid over reliance on one sector
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Secure the sustainable resources we need to achieve our plan and secure the future of WMUK
WMUK Board
Every charity has a Board. A Board is a group of elected individuals who are all responsible for the governance and strategic direction of an organisation. To govern WMUK our Board defines our long term direction, furthering its purposes as set out in our governing document. It also makes sure that WMUK is effectively and properly run with legal and all other obligations met. The Board's utmost duty is to protect WMUK's best interests through decisions made on its behalf.
Nina Pinwill
Nina is our newly appointed Chair of Trustees. She has over 20 years of experience working in the NHS at a national level, currently as Head of Commercial Operations at NHS England, where she has, amongst other things, responsibility for the Cancer Drugs Fund and patient access schemes. Nina previously worked at the National Institute for Health and Care Excellence (NICE) and focuses on ensuring earlier access to innovative treatments for NHS patients.
Eric Low
Eric has worked in the field of medical research charities for over 20 years. He founded Myeloma UK in 1996, leading the organisation as Chief Executive until 2017. He currently runs a consultancy business specialising in strategic market access, life sciences and healthcare policy, and patient and patient group engagement.
Dr Harriet Scorer
Harriet was diagnosed with WM over 20 years ago. She is a qualified doctor (gynaecology) and runs her own healthcare consultancy business.
Dr Shirley D’Sa
Dr D’Sa is a founder trustee of WMUK. She is a Consultant Haematologist with a special interest in Waldenstrom’s macroglobulinaemia and runs the largest WM clinic in the UK at University College London Hospitals (UCLH). She leads WMUK’s Biobank and Rory Morrison WMUK Registry projects that collect and store clinical data about WM.
Will Franks
Will is WMUK’s former Chair of Trustees. He has been a successfully Founder and Entrepreneur in the Tech world, as well as a Chairman, CEO, and Non-Exec Director for various companies. Will was diagnosed with WM in 2012.
Jane Kidd
Jane is a highly experienced leader who has worked in global Pharma companies for 30 years, holding global, regional, and country executive positions in strategic marketing, market access, healthcare solutions and as a managing director. She has operated as an independent Consultant and Non-Executive Director for the past 7 years, working to build board-level strategies that help transform organisations, teams and brands, elevating business performance, and driving growth and transformation.
Charles Lilley
This is Charles he is 68, retired lives in Cornwall, keeps bees and rides his motorbikes. He has worked in Health IT for over 40 years.
Clinical Advisory
Board Members
The clinical advisory committee's role is to provide advice and knowledge/ support to WMUK. The Clinical Advisory Board ensures WMUK can provide the most up-to-date information and support wherever people are in the UK. They review all our information ensuring it is accurate and up to date, help with questions raised through our support channels and provide talks as part of our series of webinars.
Dr Dima El-Sharkawi (Chair)
Shirley D’Sa
Dr Roger Owen
Guy Pratt
Helen McCarthy
Jaimal Kothari
Rebecca Auer
Charlampia Kyriakou
Kirsty Cuthill
Michael Lunn
Aisling Carr
Research
Committee Members
The research committee's role is to evaluate whether a proposed project is consistent with WMUK's mission, whether the appropriate resources are in place to conduct the research and whether the study outcomes are likely to be useful. They also have a responsibility to develop, implement and monitor the WMUK Research Strategy in accordance with WMUK's strategic plan.
Dr Harriet Scorer (Chair)
Karen Facey
Professor Sam Salek
Dr Dima El-Sharkawi
Dr Roger Owen
Joy Ellery
Jane Nicholson
Governance Committee Members
The governance committee's role is to ensure compliance with all matters related to the protection and privacy of data. They make the decisions about changing data usage, making data quality improvements and make decisions that require resources to be expended in line with WMUK's strategic objective of achieving world class data on WM.
Dr Tom Kenny (Chair)
Charles Lilley
Nina Pinwill
Dr Peter Walton
Jane Nicholson
WMUK Team
Jane Nicholson
CEO
An experienced CEO in both the commercial and not for profit sectors, Jane has experience in shaping, driving and leading organisations. Jane joined WMUK in March 2021 and is passionate about improving WM patient outcomes.
Kat Tucker
Information and Support Manager
Kat joined WMUK in 2020 as Communications and Fundraising Manager. This role has now evolved into taking the lead on developing a world class library of information on WM as well as other communications activities, and working to develop our support groups.
Alison McKinney
Clinical Support and Education Manager
Alison is a fully qualified RCN and joined WMUK in August 2022 as our Support Line Manager. She is responsible for clinical support and education, including Nurse Study Days in addition to her support line activities.
Luisa Hart
Fundraising and Marketing Manager
Luisa joined WMUK in June 2022 to cover maternity leave. She is now responsible for leading fundraising admin, developing donor programmes and related comms activities.
Julie Dawson
Registry Manager
Julie is responsible for the day to day running of the registry and liaising with all the hospitals that contribute. Part of the role is to manage recruitment of new hospitals and training for the users. Julie is a source for users to answer queries and help generally entering patient data. She also helps WM members register to send their data to the registry (PROMS).