Our vision is that people affected by Waldenstrom's macroglobulinaemia 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 consulted with the WM community through working groups and surveys to better understand the community's needs and identify key areas for development. The result: WMUK's Strategy. This document outlines our areas of work for the next 5 years, how we plan to build on our existing services, reach more patients and improve access to care.
We rely solely on voluntary donations to fund the charity's work. This year, we're aiming to raise more than ever, so we can spend more more support services and research.
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.
Eric Low - Interim Chair
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.
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.
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.
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.
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.
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)
Dr Roger Owen
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 responsibility to develop, implement and monitor the WMUK Research Strategy in accordance with WMUK's strategic plan.
Dr Harriet Scorer (Chair)
Professor Sam Salek
Dr Dima El-Sharkawi
Dr Roger Owen
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)
Dr Peter Walton
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.
Information and Knowledge Manager
Kat joined WMUK in 2020. She manages the charity's patient information, continually looking at ways to grow the library and how we communicate to the WM community. She also works on measuring the impact of the charity's work, identifying area where we can further help patients and families.
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 providing information and personal support to patients and families on the Support Line.
Database and Governance Manager
Lorena joined WMUK in the summer of 2023. With extensive experience in helping small charities to grow by harnessing the power of data, Lorena helps to ensure the charity runs smoothly behind the scenes.
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).