About CCHS UK
We support people affected by CCHS throughout the UK by connecting families, providing education and funding research.
Our Trustees
Amanda
I live in Surrey with my husband and our daughter, who has just turned three. Georgia was diagnosed with CCHS 20/26 mutation at four weeks old. She also has hypermobility syndrome.
I am the newly appointed Chair of CCHS UK, and I’m very much enjoying leading the strategy for the charity. The most recent change we have made is to add research to our remit.
I have a catering, business and customer experience background at the directorship level. When I have a free moment, I love baking, cooking and playing tennis.
Claire
I live in Norfolk with my husband Chris and our three children, Isaac, Louis and Emma (and much-loved Golden Retriever Montie). Emma, who is six, is diagnosed with CCHS 20/27 mutation and Hirschsprung’s disease.
I’ve been a trustee of CCHS since 2018, as secretary to the charity. My role includes issuing information to families, acknowledging fundraisers, supporting conferences and looking for new opportunities to enhance the work of the charity.
I also work as a Freelance Arts Consultant, and in my (rare) spare time, I enjoy running, walking, renovating my new home, reading and relaxing!
Sophie
I’m Sophie, Mum to gorgeous five-year-old Charlie who was diagnosed with CCHS at six weeks old. Charlie started school this year and is doing brilliantly, but living with this condition can still be challenging at times.
I have recently become a trustee of CCHS UK to help raise awareness and money, and I’m hoping my experience in comms will be a good asset to the team.
In my spare time, I love reading the papers and drinking tea. I also like running, netball and windsurfing, but a ruptured achilles has put a stop to any of those for the time being!
Experts and Advisory Board
Dr Avital Adato
Clinical Advisory Board Member
Dr Avital Adato is a molecular geneticist and internationally recognised CCHS researcher, serving as Chief Scientist at Yad LaNeshima in Israel. With a PhD in Molecular Genetics, her work has focused on the genetic and molecular mechanisms underlying Congenital Central Hypoventilation Syndrome (CCHS), helping to advance understanding of this ultra-rare condition through both scientific research and international collaboration.
Dr Adato is a respected member of the global CCHS research community, contributing to international research programmes, scientific publications and multidisciplinary collaborations that are shaping the future of CCHS care. She has played a key role in the development of Israel’s national CCHS centre and continues to champion research that improves diagnosis, clinical management and long-term outcomes for people living with CCHS.
As a member of the CCHS UK Clinical Advisory Board, Dr Adato brings world-leading scientific expertise and an international perspective, helping to guide the charity’s work in research, innovation, education and the advancement of care for everyone affected by CCHS.
Jonathan Bird
Advisory Board Member
Jonathan Bird is the Founder of Delivered Social, an award-winning digital marketing agency recognised for helping organisations build meaningful brands, strengthen their online presence and engage audiences through innovative digital strategy. With more than a decade of experience in digital marketing, brand development and social media, Jonathan has supported businesses, charities and organisations across the UK in growing their reach and impact.
Jonathan is passionate about using the power of digital communications to tell authentic stories, raise awareness and create lasting engagement. His expertise spans social media strategy, website development, search engine optimisation, creative content and digital campaigns, helping organisations connect with the people who matter most.
As a member of the CCHS UK Advisory Board, Jonathan provides strategic guidance on digital communications, marketing and brand development. His insight supports the charity in raising national awareness of Congenital Central Hypoventilation Syndrome (CCHS), strengthening engagement with families and stakeholders, and expanding its reach to support children, adults and families living with this ultra-rare condition
Dr Martin Samuels
Consultant Respiratory Paediatrician
Dr Samuels is a Consultant Respiratory Paediatrician at Staffordshire Children’s Hospital in Stoke-on-Trent and at Great Ormond Street Hospital in London.
He has interests in respiratory control disorders in children, including sleep disordered breathing, congenital central hypoventilation syndrome (CCHS), awake-onset breath-holding and hyperventilation, the effects of high altitude, and the mechanisms for life- threatening events and sudden death.
He worked in PICU¹ for over 20 years and was Chair of the APLS² International Working Group from 2006 – 2017, which included being a Course Instructor and Course Director. As well as APLS Guidelines Editor (4 th -6 th Editions), he has contributed to guidelines on Respiratory Control Disorders (RCPCH³), Home Oxygen (BTS 4 ), CCHS (EU-CHS Network Project 5 ) and Sleep Disordered Breathing (BTS).
He is a Designated Doctor for Unexpected Deaths in Staffordshire, and was involved in covert video surveillance for intentional suffocation, thus gaining experience in Fabricated and Induced Illness in children.
He has overseen the development of sleep services in GOSH and Staffordshire over the last 10 years, and recently completed research on the effects of flight-induced hypoxia in CCHS and neuromuscular disorders. He lectures regularly on Sleep & Respiratory Control Disorders, as well as Long Term Ventilation nationally and internationally.
