1. To promote health and to relieve those suffering from young onset parkinson’s disease (YOPD) and to provide support both for such persons and their families.
2. To advance the education of the public (including scientific education) and raise awareness in all areas relating to YOPD.
Members of the Board
CEO since 15/01/2016
CEO of Spotlight YOPD & Co-Chair of YOPD Leadership Group at the World Parkinson’s Congress. Gaynor Edwards is CEO of Spotlight YOPD, a charity representing those diagnosed with Parkinson’s under the age of 50. She founded the charity in January 2016, just a little over three years after her own diagnosis at the age of 42.
Chairman since 23/05/19
Nikki Cole is both an Alumni of Brunel University and also spent 8 years as an independent member of Council from 2008 to 2016, including 4 years as Chairman of the Audit Committee. Nikki started her career as an engineer undertaking a sandwich degree at Brunel whilst working for an Avionics company. Whilst Engineering remains her first love she also found Organization Behaviour interesting. The latter part of her career involved applying an engineering approach to making structural and cultural changes to organizations across many Industry sectors
Dr Sally Smith
Deputy Chair/Trustee since 05/02/20
Sally joined Spotlight YOPD in Spring 2020 and is Deputy Chair for the charity. Sally is a registered nurse. Having trained in London she worked clinically for 21 years in critical care before moving into senior management, including four years as a Chief Nurse. Sally has retired from fulltime nursing after over 40 years in the profession and concentrates on following her favourite football team and cycling. Sally is delighted to be part of this valuable organisation to make a difference.
Trustee since 06/01/21
Positivity Activist. Proud recipient of the BNA’s Public Engagement of Neuroscience Award 2020, Co-Founder and Frontman of Parkylife Finalist at the National Diversity Awards 2020- Positive Role Model ( Disability).
Trustee since 03/11/21
Graduated in 1986 with a BSc Joint Honours Degree in Mathematics and Computer Science, I spent the following 32 years working in the IT Industry.
Diagnosed with Parkinson’s Disease in 2014, it soon became apparent that work was not providing much emotional satisfaction, and so in 2018 I left the corporate world to concentrate on my charitable endeavours. I am a strong believer in complementary therapies, so exercise and diet are crucially important to me as I work hard to keep the PD at bay. I have every faith that given sufficient motivation, the scientific community will find the solutions to the incredibly complex puzzle that is Parkinson’s disease, and am most excited by developments in neurotrophic factors and stem cells in particular.
Trustee since 04/09/19
Working with clients and RARE communities to deliver better patient outcomes through bespoke education, support plus access and evidence generation. Every conversation I have in RARE takes my understanding that little bit further forward and I bring confidence and humility in helping you overcome your challenges to collectively make a difference. Always open to connecting with patient groups in the rare disease community to support their activities and inform our solutions.
Trustee since 03/06/20
Mark Webb has been a trustee with Spotlight YOPD since June 2020. He is a qualified accountant and holds a Master’s Degree in Charity Finance from Bayes Business School (formerly Cass) at the City of London University. He has held senior financial management positions with several major charities as well as being a long term trustee with a North London SEN charity. As well as overseeing the finance Mark has a good working knowledge of Systems and Fundraising. As he has retired from full time work he concentrates on Guitar lessons and growing vegetables.
Trustee since 01/12/21
Researcher Development Administrator at The University of Manchester and Trustee at Spotlight YOPD.
Trustee since 07/10/20
Beth is a Trustee at SpotlightYOPD. She is also a Psychological Wellbeing Practitioner and is currently completing her training to become a Cognitive Behavioural Therapist. Beth has trained in adapting therapy for those with long term conditions and aims to develop materials to make therapy more accessible for sufferers of long term conditions, such as YOPD.
Trustee since 07/10/20
Brad is a Trustee for SpotlightYOPD as well as being a PhD Student, Technician and Researcher for the Division of Psychology at Nottingham Trent University. His area of work focuses on experimental design using Unity, with current work focussing on developing Virtual Reality Exposure Therapies (VRET). His PhD focuses on a psychometric, neurological, and behavioural examination of Reinforcement Sensitivity Theory. His main role in SpotlightYOPD is to help increase our digital presence.