Our Team

Nigel

Nicholls

Nigel has served since April 2023 as the General Manager (GM) UK and Northern European Cluster (Ireland, Nordics and Baltics) for Egetis Therapeutics AB and in June 2023 added the Global Patient Advocacy Director to his responsibilities .  Nigel joined from Global Blood Therapeutics (GBT) where he was the GM for UK and a member of the European Leadership Team charged with launching voxeletor for sickle cell disease. 

Prior to GBT, Nigel spent over 10 years at BioMarin as Area Director and Country Manager for UK & Ireland. At BioMarin he managed the introductions of NICE managed access agreements for Vimizim® (elosulfase alfa) for Morquio A syndrome and for Brineura® (cerliponase alfa) for ceroid lipofuscinosis 2 (CLN2).  He is a Patron of Contact, a national patient group organization.

More importantly Nigel is dad to Matthew and CJ and husband of Sophia. Matthew is 27 years old and lives with Peter’s Plus syndrome and is teaching him what it means to be human every day!

Bob

Thompson

Bob Thompson is parent to Frank who died in 2021 aged 13 from CLN2, Kirk (22), Mae (19) and Blue the dog. Bob is also a screenwriter, producer, business consultant and university lecturer specialising in animation for film and television. A Management and Economics graduate Bob has spent over 30 years working in children’s film and tv and has held senior leadership posts at Children’s BBC and LEGO, he has also consulted for numerous other businesses large and small, including Film London. Bob is well known as the co-creator of toy franchise LEGO Bionicle. He also works as a guest tutor teaching business for creative industries students on Masters and Degree programmes. His wife Rachel, a Nurse/Counsellor is a member of the Advisory Council for Together For Short Lives, they are both keen walkers and surfers.

Lucy

Rodrick

Lucy joins us as a Trustee (PR & Communications). She has worked in healthcare communications and policy since 2018, with a special interest in rare diseases, supporting companies and charities with their communications to raise awareness of a disease and advocate for patients to get the care they deserve and need.
Lucy has been inspired by the work of the BDFA, and the strength of the families and patients it supports, and is thrilled to have the opportunity to apply her professional skills to help support the Batten community.
Lucy lives in North London and loves to travel and take road trips in the UK and beyond. She is learning to garden and play tennis. Lucy is an avid reader and TV fanatic is always happy to talk books and shows!

Mark

Thompson

Mark joined the BDFA as treasurer in 2023.

Richard

Oakley

Following a degree in Molecular Biology, Richard has spent his career advising organisations on how best to communicate in the fields of science, health and technology.
His experience includes working with numerous companies, advocacy groups, charities, government / non-governmental institutions and academia, both in the UK and internationally.
Richard lives in London with his partner Claire and their son, Tom. When not at work, he enjoys cooking, playing tennis and music.
 

Simon

Sewart

I am a father of two boys Max and Felix. Max was diagnosed with atypical CLN2 in 2019 at the age of 7. I have worked as a mechanical design engineer before moving into IT and medical data systems within the NHS. More recently I have worked on commercial web applications, including patient booking systems. I am passionate about protecting the rights and freedoms of children in health and education.

Duncan

Mann

Duncan has over 15 years of experience within Human Resources spanning multiple sectors, including FMCG, hospitality, IT, and healthcare, with roles taking him to countries including Australia, Mexico, India, and the United States.
Now based in rural Northern Ireland, Duncan lives with his husband and their four dogs. Beyond HR, he has served as a co-Director of a local community charity and Treasurer of a Highland Games during his time in Scotland.
Duncan is a Chartered Fellow of the Chartered Institute of Personnel and Development (CIPD) and is a passionate advocate for mental health education.