Chair of Trustee Board
Chair of Trustee Board
Siriana Baldini is a solicitor with extensive experience in governance, strategic planning, and legal counsel across the charity, legal, and corporate sectors. She is a Trustee with organizations focused on rare diseases, where she has led significant governance reforms and strategic initiatives to advance research and organizational effectiveness. With a background at top law firms and advisory roles for high-profile clients, Siriana has guided organizations through complex challenges in capital markets, IP, and healthcare. As Chair of the Board at Alex TLC, she is dedicated to leveraging her expertise to support the charity’s mission and drive impactful change.
Emma is currently a Research Inclusion Manager at the National Institute of Health and Care Research (NIHR). Prior to this Emma worked as an Equality, Diversity and Inclusion (EDI) practitioner and as a Library Manager in the education sector. Emma has a BA (Hons) in English with Journalism and a MA in Librarianship. Emma’s involvement with Alex TLC started in 2014 following the discovery of leukodystrophy in her family.
Sharon has extensive experience in retail having worked at board level within word wide and UK based brands. Working abroad including the middle east and Europe Sharon has gained valuable insight across different cultures and enjoyed working alongside emerging teams in newly opened markets. She has a hands on and motivational management style focusing on coaching her teams to deliver their best and enjoy their roles within the larger team delivering a great experience for the customers and the sales line for the brand. Sharons had her own goal of being part of a charity and supporting the team towards delivering much needed care and guidance so is excited at joining the team at Alex.
Iraj is a passionate accountant and a successful businessman, managing multiple companies with an eye for commercial opportunities and investing in new start-ups and technologies such as AI, Blockchain, RPA, Gene Therapy, Bio Sciences. Iraj’s objective is to raise awareness of rare genetic diseases, help to promote Alex TLC, and help raise money and deliver initiatives to help patients suffering from this family of diseases.
Treasurer
Treasurer
Linda has been preparing the charity’s year-end accounts voluntarily since 2004. She was introduced through a friend whose children were diagnosed with leukodystrophy and has continued to offer financial guidance and advice throughout the growth of Alex TLC. Linda is ACCA qualified and has worked both in industry and public practice.
Dr. Rahul Singh is a Consultant Paediatric Neurologist at Evelina London Children’s Hospital, part of Guy’s and St. Thomas’ NHS Foundation Trust. His clinical expertise lies in rare and complex neurological conditions in children, with a particular focus on inherited white matter disorders, fetal and neonatal neurology, paediatric stroke, and neuro metabolic/genetic conditions. Rahul completed his undergraduate and postgraduate medical training from Mumbai University before moving to the United Kingdom, where he undertook specialist paediatric and neurology training across leading centres. These formative years shaped both his clinical expertise and his dedication to supporting children and families facing complex neurological diagnoses. He is currently working as a Paediatric Consultant at Evelina London Children’s Hospital, Guy’s and St. Thomas’ Hospital, London. He is also an honorary paediatric neurology consultant at Great Ormond Street Hospital in the National Health Service. He is an Honorary Associate Professor in the department of Paediatrics, All India Institute of Medical Sciences (AIIMS), Jodhpur, India.
He now leads the National Inherited White Matter Disorder (IWMD) Registry in the UK and the IWMD service in London. This was a pioneering initiative that brings together clinicians, researchers, and families to improve diagnosis, treatment, and long-term care for children affected by these conditions. His leadership in this field has been recognised nationally and internationally, including the Harrison Family Award from Alex TLC in 2024 for his outstanding contributions to white matter disorder services. Alongside his clinical and research commitments, Rahul plays a key role in building international collaborations. He has been actively involved in collaboration and supporting centres of excellence worldwide, with the aim of ensuring that children with rare neurological diseases — no matter where they live — have access to expert care and emerging treatments and also access to all supportive and symptomatic treatment.
For Rahul, medicine is not just about science, but also about people. He is deeply committed to family-centred care and the importance of listening to parents’ voices in shaping management plans. His work is driven by compassion, collaboration, and the belief that progress in rare diseases comes from working together across disciplines and borders.
Sophia Walker is a communications professional with experience across PR, marketing and specialising in internal communications. She has worked in both the charity and corporate sectors, working with senior leadership teams to strengthen the impact of their communications, brand and storytelling. As a Trustee, her priorities are focussed on clear, impactful communication to support Alex TLC’s ambitions and future direction.
