Moving Forward With Research Strategy

13 October 2021

Over the last four years we have invested significant funds into targeted MND research. It is a key pillar of our Strategic Plan and as we look towards the future, we are focussed on ensuring we commit the right funds to the right projects. You can see details of how we have invested our funds so far by visiting the Research pages of our website here.

This month our trustees met to discuss the development of our evolving Research Strategy. We have commissioned a series of research prioritisation projects to see where we can have the most impact.  It is critically important that we invest in research which is most likely to benefit patients.

We need to learn from the work that has gone before, build on this experience and understand how to leverage the successes. Every £1 invested in research is vital.  You are partners in this endeavour through your amazing fundraising efforts – without you, this wouldn’t be possible.

This is an ongoing project and we will keep you updated, each step of the way.

Strengthening Our Board

We are also delighted to welcome two new trustees to the board, Sheela Upadhyaya and Matt Cooper.

Sheela is currently the Rare Disease & RAPID C-19 Strategic Advisor at NICE having recently led the activities from the NICE team on the Accelerated Access Collaborative. Her passion to secure high quality care outcomes for patients with rare diseases developed over 15 years ago as a commissioner for the Highly Specialised services in the NHS and more recently in the role of Associate Director, Highly Specialised Technology program, at NICE, responsible for running the program to evaluate medicines and technologies for rare and ultra-rare conditions for commissioning in the NHS. She has extensive experience in understanding the issues that face companies and other stakeholders when trying to secure access for medicines for the orphan and ultra-orphan conditions. These include developing innovative access arrangements in liaison with industry, clinicians, patients and the NHS.

Sheela sits on the board of the World Orphan Drug Congress and has participated in several European projects such as ORPH-VAL European Working Group for Value Assessment and Funding Processes in Rare Diseases, working on its nine principles to help improve the consistency of Orphan Medicinal Products (OMP) pricing and reimbursement (P&R) assessment. She was also part of the TRUST4RD tool designed to guide policymakers, health technology assessment (HTA) authorities, regulators and payers on a collaborative approach to optimise real-world evidence (RWE) and develop guidance on novel approaches to appraise OMPs.

Matt is an experienced Director with a demonstrated history of working in the hospital and health care industry, primarily in clinical and health data research settings. As an Executive Director of a national organisation, he has strong leadership skills and a track record of collaboration having worked in academia, pharmaceutical industry and the NHS. He is skilled in clinical research management, translating science into lay terms and public speaking and has a strong marketing and business development background having graduated from The Institute of Directors. Matt has travelled extensively, nationally and internationally, promoting UK Plc.