NCBRS Worldwide FOundation Board members
Lee Reavey
Co-Founder/Trustee London, United Kingdom Lee is a husband and father of four, including Callum (son with NCBRS). Lee has been instrumental in spreading awareness of NCBRS, by means of this website, our NCBRS Facebook group, working with Jeans for Genes UK charity, organizing face to face meetings in the UK, establishing the foundation, setting up a medical registry and much more… being an extraordinary advocate for his son and all NCBRS families. You can read Callum's story here. |
Nuala Ryan BSc (Hons) Pharmacology
Chair of Trustees & SAB Member Dublin, Ireland Nuala is a mother of a child with NCBRS, so has day to day experience of the challenges the syndrome can cause for children with NCBRS and hence the areas of research that can help with this. Nuala has 30 years drug development experience, both in pre-clinical and clinical development of compounds across numerous indications and therapeutic areas globally. She has a BSc in Pharmacology, a Diploma in International Business Management and training in Patient Advocacy and Engagement through IPPOSI in Ireland along with their Educational partners (UCD, Trinity College and the HPRA). Nuala is also experienced in the management of numerous Public Private Partnerships in the EU, involving coordinating activities of up to 40 academic, pharma, technology and Patient Organisation groups working together to solve key health related issues, which include projects improving diagnosis of rare syndromes through genetic newborn screening (NBS) and through technology (artificial intelligence/machine learning). As well as being Chair of the Trustees for the NCBRS Worldwide Foundation, she serves on Steering Committees for multiple projects and initiatives such as: Genomics Data infrastructure Ireland, Future Neuro RCSI Governance Committee, Member of the Health Product Regulatory Authority (HPRA) Patient panel, Member of the Pharmacy Taskforce Ireland, Former Board member of Genomics Medicines Ireland among others. Nuala is committed to using her experience to further research into NCBRS and its related conditions. |
Shabnam Khademian
Trustee Northamptonshire, United kingdom Shabnam is a wife and mother of one. She has a background in science and previously worked as a pharmacist for a number of years before taking up a position with the UK Medicines Healthcare Regulatory Agency where she is working as a safety scientist. She is passionate about helping communities and is grateful for the opportunity to be involved with the NCBRS charity to support the vision and mission of this wonderful charity helping families affected by NCBRS. |
Christine Mutena
Trustee Nairobi, Kenya Christine is an immensely passionate advocate for rare diseases and disabilities in general in Kenya and globally. These causes are deeply personal to her being a mother of two children, both of whom have non-related rare genetic conditions. Christine is the co-founder of Rare Disorders Kenya, a patient-led organisation that seeks to amplify the unmet needs of the rare diseases community that creates awareness of rare diseases in Kenya, more so through the Rare Disease Day campaign, and to policymakers. She is also on the Patient Group Engagement Committee of Beacon for Rare Diseases (2021-2023). Founder of Step by Stones Association, an organisation that leverages social media platforms to offer support to its community of special needs parents, caregivers and psycho-social support specialists. Her life objective is to hone and use the skills and knowledge garnered through her personal and professional experiences to aid children living with disabilities to live fully independent lives with dignity. |
Dr. Chui Fung Chong - MD
Trustee & SAB Member Basel, Switzerland Dr Chui Fung CHONG is a veteran in drug development, currently a Senior Medical Director at Roche with a focus on immunology early development, aiming to transform patients' life suffering from autoimmune diseases, including IBD, lupus and respiratory areas with innovative medicines. Dr Chong previously served as the Gastroenterology Therapeutic Area Lead APAC at Takeda and Influenza Franchise APAC Regional Medical Expert at Sanofi Pasteur. She oversaw the development programs of more than 10 novel medicines and vaccines in GI diseases, influenza, anaesthesia and women's health. She is an accomplished scientific leader with regular presentation at congresses and a recipient of 3 awards of Poster of Distinction at Digestive Diseases Week and American Transplant Congress. She had advised 2 MedTech startups in the gastroenterology and respiratory areas. She also holds the role of Regional Director of Marketing for Healthcare Businesswomen’s Association Europe and is a member of European Women on Boards. Dr Chong received her M.D from University Putra Malaysia, her Diploma in Pharmaceutical Medicine from University Libre de Bruxelles and Master in Medical Physics from University Paris Descartes. She completed her post-graduate clinical practice in several tertiary hospitals in Malaysia. |
Jenny Brown
Trustee Buckinghamshire, United Kingdom Jenny is a registered pharmacist with extensive experience working in the pharmaceutical industry, much of which has been within the field of epilepsy. She is passionate about charting patient journeys in order to identify key touchpoints where there are opportunities to improve the lives of patients, carers and their families whether this is through research, awareness or education. Recognised for her ability to develop strategy and plans, she is excited to be able to support the NCBRS Worldwide Foundation to achieve its mission. |
The NCBRS Worldwide Foundation Board is made up of volunteer Trustees, we currently operate with no paid staff. The board invest their own time to help the Foundation fulfil its vision and mission.
Previous Board members
Lara Pastura
Trustee Sydney, Australia Lara stepped down from her role at the end of September 2023. Lara's contributions to the Foundation have been immeasurable. She has been instrumental in raising awareness of NCBRS, supporting families through our family Facebook group, and much more. Lara is a wife and mother of two, including Alex (son with NCBRS). She's incredibly friendly, helpful and knowledgable. You can follow Alex on Instagram here. On behalf of all our NCBRS families and the NCBRS Worldwide Foundation Board of Trustees, we extend our sincerest thanks to Lara and send our warmest wishes. You can read our statement here. |
Helen Robinson
Co-Founder/Trustee Ontario, Canada Helen stepped down from her role at the end of March in 2022. Helen was instrumental in spreading awareness of NCBRS, by starting this website, our NCBRS Facebook group, organizing face to face meetings in Canada, designing apparel and creating a NCBRS store, establishing the foundation, setting up the CoRDS registry and much more… being an extraordinary advocate for Kyle (son with NCBRS) and all NCBRS families. You can read Kyle's story here. Our sincerest gratitude goes to Helen for making a difference in the lives of so many families around the globe, we will miss her passion and dedication greatly and wish her every happiness and success for the future. You can read our statement here. |