Meet the trustees

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

Helping empower people living with IMDs and their families...

Hi, I’m Carl and I am really excited to become a Co-Chair of Metabolic Support UK and help lead the next steps for MSUK.

Having been diagnosed with a rare form of anaemia (Pyruvate Kinase Deficiency) at the age of four, I have experienced a wide range of treatments over the years. Having spent my career in nursing and health service management. I am passionate about advocating for the lived experience of people with a rare disease and their carers.

In my role as co-chair, I particularly look forward, to helping empower people with an Inherited Metabolic Disease and their families to advocate for the very best, evidence-based care. I also wish to ensure that people have access to the widest support, including emotional and psychological support and financial wellbeing advice.

Providing passion and insight to the MSUK team...

Hello I’m Mel. I live with an ultra rare metabolic bone condition as does my daughter and little granddaughter. My journey to diagnosis was long and extremely frustrating with misdiagnosis and many visits to specialists along the way. I have been employed until the work life balance became too difficult and later became self employed so that I could work to my strengths and pace my days. I have been a PA, a teacher, worked for the Health Board as a coordinator/ tutor helping people to learn to self manage their long term health conditions and run my own businesses.

My personal journey and that of my family has given me an insight into how challenging it is to live with a rare condition but along the way I have needed the support of Metabolic Support UK. I set myself a goal upon diagnosis that I was going to raise the profile of rare disease to better help both my family and others. Over the years I have taken the opportunity to support the work of MSUK by getting involved when needed.

My hope is that my passion and insight makes a useful part of a great team.

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 both small biotechnology and large pharmaceutical companies. I’m currently co-founder and Chief Executive Officer for Bloomsbury Genetic Therapies and I have been working in the field of rare diseases and in particular IMDs for most of my career, including in previous experience at 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 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.

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.

Guiding MSUK from the very start of the charity to help people living with IMDs...

Hi, I’m Bob and I was the first trustee at Metabolic Support UK.

I began my career in Paediatric medicine after graduating from Leeds University in 1970. After completing training in Glasgow and Liverpool, I became only the second paediatric consultant at Leighton Hospital in November 1978.

During my career, my interest was focused on the care of children with long-term and life-limiting conditions and I now continue my work in the health service as a local hospital governor, keeping up to date with health service developments.

Outside of my work in healthcare, I am studying for an M.A. in Music at the Open University.

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.

Paul Roper-Trustee

Helping MSUK achieve their goals through my lived experience and knowledge of the sector...

Hi, my name’s Paul and I’m a trustee here at Metabolic Support UK.

I am now retired but worked as a Chartered Engineer on behalf of British Airways. I was also a trustee of the national disability charity, Scope, for 12 years and chaired a charity that worked with people with profound and multiple disabilities to provide services, following the birth of my son, Mark, who was born with Leigh Syndrome which is an inherited metabolic disorder (IMD).

Using my lived experience and knowledge of the disability sector, I work to help Metabolic Support UK achieve its objectives to ensure people living with IMDs are cared for and supported. 

Providing guidance to support the charity to achieve their goals...

Hi, I’m Roshni and I’m a trustee here at Metabolic Support UK.

I trained in children’s liver disease at King’s College Hospital and inherited metabolic disorders at Great Ormond Street Hospital and Evelina London. I now work as a consultant in paediatric inherited metabolic diseases helping those referred for liver transplantation.

Working in a position in which I care for people living with IMDs, I thought it would be a great idea to join the board of Metabolic Support UK so I can provide my guidance to support the charity to achieve it’s goals.

Meet the team

Interested in learning more about the team at Metabolic Support UK?

Click the button below to navigate to our “Meet the team” section of the website!

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