Supporting and guiding MSUK with my knowledge and business experience...
Hello, I’m Paul and I am delighted to be elected co-chair for Metabolic Support UK.
My background is a scientific education, followed by now 30 years (gulp!) experience within the Pharmaceutical industry, firstly working in clinical research and clinical trials and then within a variety of commercial functions. Most of that commercial experience and launching has been in rare, genetic and in a lot of cases, metabolic conditions and I have often been employee number 1 in a new group or indeed a new company, so am well used to rolling up my sleeves to do whatever is necessary!
Currently, I am the General Manager for Apellis Pharmaceuticals, establishing the company across the UK, Ireland and the Nordics in preparation for launch of a therapy in a currently untreated ophthalmic condition. I hope to be able to support and guide Kirsty and her team with my own knowledge and business experience, plus direct hands on help as needed and appropriate. As a start, I have signed up to one of the London Marathon places for 2024 so will be pounding the streets to raise some funds for MSUK
Supporting and empowering individuals and families affected by IMDs...
Hello, I’m Madhia. Pursuing a career in law whilst balancing the challenges of living with Glycogen Storage Disease (a rare genetic condition) has played a significant role in shaping who I am today and the path I have chosen.
I currently work as a Legal Officer and have successfully completed my Bar exams. My background in law has equipped me with strong analytical, communication, and advocacy skills, and has strengthened my commitment to supporting others and making a meaningful impact.
Living with Glycogen Storage Disease all my life has given me a deeply personal understanding of the challenges faced by individuals with rare metabolic conditions. Growing up with limited support has shaped my resilience and driven my passion to ensure that others have better access to guidance, understanding, and community.
As a trustee of Metabolic Support UK, I hope to use both my professional background and lived experience to support and empower individuals and families affected by metabolic conditions. I am committed to raising awareness of rare diseases, advocating for improved support, and helping to ensure that no one navigating a rare condition feels alone.
Helping deliver MSUK's 10-year strategy and learning from the IMD community...
Hi, I’m Adrien! I have over 20 years of experience working for small biotechnology and large pharmaceutical companies, and more recently the charity sector. I’m currently Chief Business Officer for LifeArc, a not-for-profit life science organisation leading the way for change in rare diseases and supporting promising initiatives in global health. I have been working in the field of rare diseases and in particular IMDs for most of my career, including in previous experience at Bloomsbury Genetic Therapies, Orchard Therapeutics and GSK’s Rare Diseases Unit. I have a broad experience covering management, research & development, partnering & alliances, market research and finance that I hope will be useful to the growth and good governance of MSUK.
I have had the privilege to work for and collaborate with great charities operating in the field of rare diseases and to witness first-hand the essential roles they are fulfilling. MSUK’s vision is bold and exciting, and being a Trustee gives me a chance to be involved in this rewarding journey as we deliver on our 10 years plan, and to get a chance to learn from the experience of the fantastic IMD community.
Sharing my insights from being a commissioner of NHS services and continuing my passion for patient-centred healthcare outcomes...
Hi, I’m Fiona and I’m a Trustee at Metabolic Support. I worked for the NHS for over 30 years in commissioning and had the privilege to work with the charity during my career.
I had a particular interest in commissioning specialist services and ensuring that innovative treatments reached patients. I can support the team in navigating complex NHS systems and structures. I am passionate about patient and family involvement in designing healthcare services that optimise outcomes.
Using my experience in translational research and rare disease advocacy to improve outcomes for people affected by IMDs...
Hi, I’m Felix. I am an academic at University of Birmingham; where we run a research lab working on understanding epilepsy in Inherited Metabolic Disorders (IMDs). I am delighted to serve as a Trustee for Metabolic Support; where I hope to bring my research and knowledge base in IMDs to the team. Our group work in translational research; to develop new therapies to target drug-resistant epilepsy in IMDs. This can be achieved by many strategies, such as dietary therapies, gene therapy, and/or drug treatment. Thus, I have a well-rounded expertise in IMDs and their treatment; and hope to help guide Metabolic Support in this aspect of their work.
In addition to my research role, I am a passionate advocate for involving and engaging patients in biomedical research. Through direct first-hand experience, I have noticed that engaging patient at the early stage of the research process and at all stages of the research can bring valuable input to our research. It also helps us ensure that our research continue to address the real need of the IMD and rare epilepsy community.
Finally, I am very passionate about global health and healthcare inequity. As Metabolic Support enters its new chapter to support patients with IMD worldwide, I look forward to enthusiastically support Metabolic Support in this growth. I have first-hand interaction with members of the IMD community from lower-resource countries and inequity in access to treatment choices and clinical/scientific expertise can be heartbreaking. I hope that Metabolic Support can fill in the gap where possible; and I enthusiastically support the charity in achieving this for the benefit of the IMD community wherever they are in the world.
Supporting the MSUK team and helping advocate for the IMD community...
Hi, I’m Rosie and I’m a Trustee at Metabolic Support UK. I am a Policy and Public Affairs Manager at the BioIndustry Association, the trade association for the UK life sciences sector. In my role, I lead the BIA’s policy work on access to medicines, rare diseases, cell and gene therapies and antimicrobial resistance.
My background is in politics and public affairs, and I am experienced in developing and delivering plans to influence policy. Through my role at the BIA, I have been able to work with many of the wonderful organisations working to improve the lives of people living with rare diseases, including rare metabolic disorders. It is a privilege to be a Trustee at MSUK, and to support the fantastic work of the team in supporting the IMD community and advocating for solutions to the challenges they face.
Using my knowledge and expertise to support the charity...
Hi, I am Reena Sharma and am delighted to join the Metabolic support UK as a trustee.
I am a consultant in the adult inherited metabolic diseases at The Mark Holland Metabolic Unit, Salford Royal Hospital, Salford in Greater Manchester. I joined the consultant post after being trained in the same region.
As a part of my role I care for adults with various metabolic diseases and support the families. I am actively involved in research looking into new therapies for some of these very challenging rare diseases. I hope I can provide my knowledge and expertise to support the charity to achieve it’s goals.
Overseeing MSUK's finances to ensure the charity can deliver its strategy effectively...
Hi, I’m Scott and I’m a trustee here at Metabolic Support UK.
I am a chartered accountant and the current Director at SLE Investments Limited. I have over twenty years of experience working for a range of organisations.
I now act as the treasurer for Metabolic Support UK, offering my experience to oversee the charity’s finances, ensuring it can deliver its strategy effectively to improve the lives of people living with Inherited Metabolic Disorders.
