Who We Are
Jill Prawer: Founder and Chair
Jill was diagnosed with LPLD aged two and has learned to live with the condition after many years of trying. She has three children. In 2012 she set up the LPLD community on RareConnect. She is now a Fellow of the European Patients Academy on Therapeutic Innovation (EUPATI) having successfully completed its course on the medicines research and development process.
Jill qualified as an existential/humanistic counsellor in 1994 and spent many years working in the Voluntary Sector before becoming a carer to her second child who was diagnosed with a brain tumour in 2005 (unrelated to LPLD). Jill is now a support specialist for a brain tumour charity and has been trained as a coach and is working towards achieving a diploma in coaching
Alan Larsen FCA: Trustee/Hon Treasurer
Alan is a Chartered Accountant (qualified in 1982) and has spent over 15 years in not-for-profit organisations in senior financial and management roles. This includes eight years (from 2002 to 2010) as Director of Research & Finance / Deputy Chief Executive at the Cystic Fibrosis Trust, the UK medical research charity and patient organisation for people affected by Cystic Fibrosis.
Over the years, Alan has served as Trustee and Hon Treasurer for a number of charities, including six years in that role on the Council of the Association of Medical Research Charities (AMRC).
Lucia Tambini: Trustee
Lucia is a documentary film maker and camerawoman and has spent over 15 years in television news, including time spent working in ITN’s Health Bureau. She also has a small production company Lapwing Films which makes films for charities and NGO’s. Recently Lucia has worked with Oxfam, Shelter and SeeAbility. She has often filmed in hospitals working with patients to tell their stories.
Helen Aderin: Trustee
A former University Lecturer, Helen Aderin is a Counsellor, Supervisor and Trainer. Since setting up a counselling service for adults with learning difficulties in the 1990’s she has served as a director on a number of boards including property companies and a charity.
Rebecca Sanders (PhD): Trustee
Rebecca has been a research scientist in the field of molecular biology for over nine years. She is also the co-founder of Lipodystrophy UK and is involved in various activities related to patient advocacy, education and awareness.