Meet the Team

CEO

Lucy McKay

Partnerships & Community Manager

Jo McPherson

Jo McPherson is our Partnerships & Community Manager, responsible for M4RD’s Corporate Partnership Programme, Ambassador Programme and the key point of contact for Patient Advocacy Groups.

Prior to joining the M4RD team, Jo worked for the International Gaucher Alliance for over 9 years, so has extensive experience of working in a rare disease and not-for-profit environment.

Jo lives in Gloucestershire and loves escaping to the seaside!

Strategic Operations Manager

Katie Sutton

Katie Sutton is our Strategic Operations Manager responsible for the operational core of M4RD, providing oversight of the delivery of the charity’s strategy, ensuring that objectives are met. She also manages and leads on the Department of Health Independent Advisory Group for rare diseases.

Katie is a Registered Nutritionist, having studied Public Health Nutrition at Leeds Beckett University. After working overseas on health and nutrition projects with an Indonesian charity, she moved back to the UK and continued her Public Health Nutrition career in Brighton and Hove.

Her interest in rare diseases was sparked in 2018 when she was diagnosed with Behçet’s – a rare condition causing inflammation of the blood vessels.

Katie lives in Hove and spends much of her free time hiking with her Spaniel.

Training Programme Manager

Helen Maginnis

Helen Maginnis is our Training Programme Manager and is responsible for M4RD’s healthcare professional training projects and activities, rolling out Rare Disease 101 training for healthcare professionals all over the UK!

Helen studied medicine and genetics at the University of Glasgow where her interest in rare disease began. After working as a junior doctor, she spent several years supporting families impacted by Huntington’s disease before joining M4RD.

Helen lives in Glasgow and loves escaping into the Scottish countryside. 

Communications Lead

Emma Huskinson

Digital Projects Officer

Eleanor Churchill

Eleanor is our Digital Projects Officer and has an extensive background working as a Digital Content Producer for Hull UK City of Culture 2017, the BBC and The British Council. In this time she has worked on projects such as The Turner Prize, the installation project ‘Look Up’, and the launch of the CBeebies app Get Creative.

For the last few years she has been working on her own macrame business where she sells macrame wall hangings, instrument hangers and craft supplies via her website and on Etsy.

Eleanor is training in counselling and aside from these interests, is also a drummer in a band from Manchester who regularly enjoys gigging, getting fit and spending quality time with her cats.

Chair of Trustees

Lindsay Weaver

Lindsay Weaver is the Co-founder and CEO of Realise Advocacy, the former CEO of MSUK where she served for 6 years and has been a trustee at Medics 4 Rare Diseases since 2020. Lindsay also served as NHS England Metabolic CRG PPV member for over 4 years.

During her time working in rare diseases she has developed knowledge of how NHS England manage services and commission treatments for complex and rare conditions and the challenges that all stakeholders face in these processes.

Lindsay has built up significant knowledge of the difficulties that rare disease patients face in diagnosis and gaining access to the right care and treatments.

Trustee

Chris France

Chris has a background in business, primarily fast moving consumer goods and pharmaceuticals.  In 2012 he left that world to start his own e-commerce company, which has since become the UK’s largest speciality beer site.

Whilst retaining active involvement in that, he also assists start-ups and budding entrepreneurs to get their businesses off the ground.  He lives in North Yorkshire and spends his spare time being outfoxed by his two young daughters.

Trustee

Hannah Grant

Hannah originally studied Biology at The University of Edinburgh before undertaking her medical degree at Barts and The London where she was part of the team that founded the Barts and The London Society for Rare Diseases. She was interested in promoting the education of rare diseases amongst medical students, encouraging the ‘think outside the box’ mantra when considering a diagnosis.

Hannah is now training to be a GP in London and hopes she can utilise her knowledge of rare diseases to improve the rare patient journey in healthcare. She continues to campaign for rare disease education for medical students and doctors in training and is planning to introduce a rare disease training day into the local GP training schemes.

Alongside her medical studies Hannah also plays lacrosse to a high level and has represented Scotland at three World Cups.

Treasurer

Debra Fine

Debra Fine initially studied Natural Sciences at Cambridge University. She then trained as a Chartered Accountant at PricewaterhouseCoopers LLP and worked there for five years. Debra retrained as a doctor, graduating from Barts and The London School of Medicine and Dentistry. She is now a GP Trainee at University College London Hospital.

She is Treasurer of Medics4RareDiseases and strongly believes in the importance of educating doctors and healthcare professionals about rare diseases.

Trustee

Dan Jeffries

Dan is the proud owner of not one but two rare conditions. At 4 years old Dan was diagnosed with Wyburn-Mason syndrome, an exceptionally rare Arteriovenous Malformation affecting the optic nerve and midbrain. Consequently he is blind in his left eye. It is thought that there has been less than 100 reported cases in the past 50 years – worldwide.

And then at 30, Dan was diagnosed with Acromegaly: a condition caused by excess release of growth hormones due to a pituitary adenoma. There are about 5 people per million diagnosed with this condition each year.

In 2015, Dan published his memoir ‘Me, Myself & Eye’. Since then, Dan has spoken at numerous events including the Vancouver Acromegaly Conference in 2017 (for which he won a scholarship place for his advocacy work), Rare and Orphan Drugs conference in Belgrade, Cambridge Rare Disease Network and more. Dan is also a Volunteer Ambassador for The Pituitary Foundation and has written numerous articles on what it means to ‘be rare’. Dan also founded the UK Acromegaly Meetup, now in its third year.