Last updated on September 28th, 2024 at 10:56 pm
Our Trustees
Nicola Taverner
Dr Nicki Taverner is a Registered Genetic Counsellor, and has been working with individuals and families affected by genetic conditions since 2007. She is employed by the All Wales Medical Genomics Service in Cardiff. She is also the Deputy Director of the MSc Genetic and Genomic Counselling programme at Cardiff University, training students to become genetic counsellors.
She was elected onto the committee for the Association of Genetic Nurses and Counsellors (AGNC), the professional body for genetic counsellors in the UK and Ireland, and served for two years as Chair until January 2022. Therefore, she has been involved in policy and pathway development nationally, working with many stakeholders including support groups for those affected by genetic conditions.
She joined as a trustee of Gene People in 2022.
Alastair Kent OBE, Chair
I am honoured to have been asked to become a trustee of Gene People. The organisation has played a very significant role in raising awareness of rare and genetic diseases among the general public for many years. Gene People now stands at a crossroads and must look to the future, defining and delivering its role and helping to secure the wellbeing of the individuals and families it seeks to support in the post Covid healthcare environment. I look forward to helping Gene People rise to this challenge and to ensuring that it continues to be a force for good in the years to come.
Alastair joined the board in November 2020.
Saurav Mitra Financial Trustee
Saurav is a Director in Barclays Private Bank Audit. He has over 20 years of experience in Finance, Risk and Control. His experience has mainly focussed on Financial Markets with leadership roles at Barclays Audit (covering the Private and Investment Bank), BP Trading and BG (now part of Shell) Trading. He also qualified as a Chartered Accountant with Ernst & Young covering Commodity and Capital Markets trading businesses.
He has over 5 years voluntary Board experience in two organisations: (1) Non-Executive Director of EPIC CiC – a social enterprise spun out of, and providing Youth Services to the Royal Borough of Kensington and Chelsea; and (2) Advisory Board of CreditEnable – a startup organisation that has created a proprietary credit analytics platform supporting the origination of large volumes of loans for social enterprises in the developing world.
Saurav is qualified academically in Economics (MPhil, Cambridge University) and professionally in Finance (Business and Finance Professional, Fellow Chartered Accountant of Institute of Chartered Accountants of England and Wales – ICAEW).
Crystal Ruff
Dr Crystal Ruff is a biotechnology expert with focus in the intersection of stem cell & regenerative neuroscience, genomics, Artificial Intelligence (AI) and translational health research. Most recently, leading Commercial Strategic Initiatives and Innovation in Europe, Middle East and Africa for Illumina, she has 16+ years’ experience in international clinical, preclinical and commercial Biotech and Healthcare management. She is a regular speaker, having created a TEDx Talk with nearly 100K views, and several keynotes on areas such as genomics, perinatal neuroscience, regenerative medicine, artificial intelligence, leadership and motivation. Crystal has a PhD in Neuroscience from University College London and an MBA from the London Business School and she joined the Board of Gene People in 2019.
Chris Conway
Chris is a technology expert spending most of his 25 year career running technology teams in the banking sector. He has worked with many of the largest global tech giants including Google, Amazon, IBM, TATA and InfoSys, migrating a number of services to Cloud platforms.
Chris is currently a Managing Director at NatWest Markets running Technology for Risk, Finance, Surveillance/Compliance and Legal. At NatWest, Chris is championing Diversity and Inclusion across technology and is passionate about leadership and developing people.
Derek Ansel
Derek Ansel has been working in clinical research for over a decade, with a primary focus on rare and orphan diseases. Currently, Derek is Senior Director, Therapeutic Strategy Lead for Rare Disease at Worldwide Clinical Trials. Derek’s efforts are largely centered on patient education and empowering patients to make decisions that best fulfil their lives. He frequently speaks at conferences on the importance of providing adequate education to rare disease patients in clinical trial settings. In his spare time, he volunteers with the Castleman Disease Collaborative Network, Cochrane, the Children’s Hospital of Philadelphia Vaccine Education Center, and the Institutional Review Board at Jefferson University in Philadelphia. He holds a MS in Pharmacology and Toxicology from Michigan State University and is pursuing a MS in Genetic Counselling from Bay Path University.
Arti Patel
Arti is a passionate patient advocate with over 10 years’ experience working and volunteering in the third sector. Arti was born with Treacher Collins syndrome and a hearing loss. Using her personal experience and knowledge gained through her studies, volunteering, and employment placements, she has been able to support patients and carers living with a rare disease and hearing loss. She has a BSc in Physiology and Pharmacology and PgDip in Genomic Medicine.
Nigel Nicholls
Nigel Nicholls 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 Global Blood Therapeutics (GBT) where he was the GM for UK and a member of the European Leadership Team. Prior to GBT, Nigel spent over 10 years at BioMarin as Area Director and Country Manager for UK & Ireland. He is a Patron of Contact, a national patient group organization and also acts as an advisor to BDFA UK (Batten Disease’s National Charity).
Nigel’s first degree was in Biochemistry (Essex) and he undertook further study at Surrey University in Pharmaceutical Medicine and focused his dissertation on the ‘Ethics and economics of orphan drugs’. He has been an invited speaker at several conferences related to orphan drug development, access and pricing issues in the orphan drug field. He undertook formal business training with an MBA at Bath University in 2005.
More importantly he is dad to Matthew and CJ and husband to Sophia. Matthew is 27 years old and lives with Peter’s Plus syndrome and is teaching Nigel what it means to be human every day!
Dr. Charles Steward
Dr. Charles Steward is an internationally renowned patient advocate and genome scientist. He has more than 30 years’ experience working with the human genome and rare diseases, predominantly on the Wellcome Genome Campus, Cambridge, UK. He spent 22 years at the Wellcome Sanger Institute, which is where he did his PhD. He has co-authored numerous publications, including leading the initial human chromosome 10 analysis, published in Nature (Deloukas et al., 2004) and establishing an international collaboration investigating the genomic basis of developmental and epileptic encephalopathies, published in npj Genomic Medicine (Steward et al., 2019). Charles co-leads an international study looking at the genetic basis of cerebral palsy. He is currently Head of Patient and Participant Engagement at Genomics England, UK and Associate Director at HealthWeb Solutions, UK.
Charles is a scientific and patient advocacy advisor to numerous groups, including CRELD.org, CureDHDDS.org, FAM177A1.org, GeneHub, HOPE for Paediatric Epilepsy London, Myrovlytis Trust and VAMP2.com. He is a member of the Governance Council for the International Cerebral Palsy Genomics Consortium and was recently elected to the IRDiRC Diagnostics Scientific Committee.
Charles is also the father of two children with severe neurological disorders who have been through numerous UK-based genomic studies, including the 100000 Genomes Project, although they both remain without a genetic diagnosis. He is passionate about how patient advocacy and engagement can drive positive change for people, families and caregivers affected by rare genetic disorders.
