Who We Are
The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives.
The group comprises people from a wide range of other charities and support groups: all with the common aim of ensuring that the voice of people with Down syndrome is heard in society and reflected in government policy.
The NDSPG comprises founding officers from a wide range of other charities and support groups as show below:
Founding Officers of the NDSPG
Sarah worked in overseas development in Kenya and Bolivia before studying for a degree in African and Asian Development and Politics. In 2001 Sarah qualified as a nurse and enjoyed working as a Palliative Care Nurse Specialist at a local hospice. She has 3 daughters and her middle child, born in 2013 has Down syndrome. Sarah gives lectures to midwives about delivering ‘unexpected news’ as part of their ongoing professional development. She is passionate about supporting expectant parents with accessible and contemporary information and in raising the profile of the health status of those with Down syndrome. She is a trustee at DSRF.
At 18, Fionn Crombie Angus became a pioneer in self-directed support. Seven years on, he is a social entrepreneur. His Happiness Project contains 600 filmed interviews where Fionn asks, “What do you love about your life?” Co-Chair of the IASSIDD Inclusive Research Group and Citizen Network’s International Ambassador, he has lectured at 30 colleges and taught 10,000 school children about animals. He leads advocacy and inclusion workshops for people with disabilities, families, and professionals. As a visual artist he has exhibited in London, Galway and New York, and he is an accomplished fiddler, playing on travels from the Amazon to Zanzibar.
Jonathan taught children, with and without additional learning needs, for 25 years. When his only son was six, he and his wife took the government to High Court, winning funding for Fionn, who has Down syndrome, to be supported in their chosen school. While researching a PhD, Jonathan agreed when, upon leaving school, Fionn asked to be accompanied on his quest for a great life. As social entrepreneurs, a primary goal is to share the knowledge they gain on their adventures. They are trustees of Manavodaya International UK, supporting the empowerment of women in rural India.
Bethany Asher started acting professionally in 2018 when she landed a featured role in BBC DOCTORS. Since then she has appeared regularly in CBBC The Dumping Ground, ITV Wild Bill with Rob Lowe. Bethany has also worked in a number of short films as Sarah in INNOCENCE by Ben Reid in leading roles with Amanda Abbington and Gemma Arterton in the THE CUNNING. It's important to Bethany that she and others with Down's Syndrome and disabilities change people's perceptions and she believes diverse characters in the lead roles is one way to do that. Bethany is part of the learning disability focus group for DANC and Triple C. The focus of the group is to come up with solutions around access and inclusion within the performance industry.
Lynn has professional experience as a business analyst and computer developer. She has four children and her youngest has Down syndrome. She has been working for the Don’t Screen Us Out campaign since its inception on 2016. The campaign works over Scotland, England, Wales and Northern Ireland, seeking to improve the experience of women in pregnancy and help people to present Down syndrome in a way that fits in our society today. The campaign was one of the Big Issue100 Changemaker’s in 2019 for its work. Lynn is a Trustee at DSRF UK.
George is an actor, dancer, presenter, a public speaker and a very positive person. In 2021 he became the first BBC presenter with Down Syndrome. George has featured in a number of films too. George is also a member of Talent Hub which led to him becoming a Yorkshire Dance Ambassador, and he dances regularly with his long standing group Me2. George is an ambassador for Mencap, and he did a short film for BBC Bitesize, on World Down Syndrome Day, entitled “5 Myths about Down Syndrome” that went viral on social media, with around 4 million views across social media. He is well known in the Parkrun movement and featured in his where he is also a Parkrun volunteer and ambassador. George is a student at Mind the Gap Studios in Bradford and enjoys working as a barista, as well as volunteering. He loves films and musical theatre.
Angie’s background is a variety of skilled jobs within the health sector, then in 2006 her middle child was born with Down syndrome and she developed a passion for supporting new parents to have access to balanced contemporary information around the condition. She spent the next 13 years on the board of Cornwall Down’s Syndrome Support Group Charity (CDSSG) where she is co-author of the Looking Up book series, Publication & Training Lead and group Secretary. After 7 years as Director of Cornwall Accessible Activities Program Charity, Angie changed direction in 2020 and is now a foster Carer for her local authority. Angie is an Expert by Experience at the Institute of Health Visiting, a Trustee of CDSSG and a Founding Member of NDSPG.
With an Honours Degree in Agriculture and having spent 20 years in Estate Management, Caroline and her husband now have their own business in Ecological Consultancy. Caroline is a founding Trustee of DSUK with its initiative Positive About Down Syndrome (PADS); a Trustee of her local DS support group, supporting 70 families; Trustee of a grant making Charitable Trust and Executive Director of a local restaurant and deli business. Caroline’s middle son has DS, he is 17 years old and enjoying his first year at college having been the first child with DS at both his mainstream primary and secondary schools.
Lucienne has a Masters in Cancer Science and 18 years experience in scientific research. Her youngest son has Down syndrome, 8 years ago she founded the support group Get On Down’s which supports 50 families in the London Borough of Sutton. Lucienne delivers Down’s syndrome training to Universities and Hospitals throughout the UK and locally set up a Down Syndrome Champions scheme for maternity staff and health visitors to ensure continuity of care. This work has involved embedding a Down Syndrome Antenatal Care Pathway in to hospital guidelines and setting up the Down Syndrome Maternity Charter.
Although trained as a Barrister, Peter’s career initially involved consulting to pension funds on investment strategy, addressing strategic asset allocation and implementation. More recently Peter began his own consulting business, supporting boutique firms in navigating the institutional marketplace. Peter is the Treasurer and Trustee of PSDS – Providing Support for children with Down syndrome and their families, and treasurer of a local community charity. Peter is married with two children, the younger of whom has Down syndrome.
MBBS iBSc Psychology MRCPsych (Member of the Royal College of Psychiatrists) Dr Elizabeth Corcoran is sibling to David, a psychiatrist and chair of the Downs Syndrome Research Foundation for over ten years. She advocates for evidence based interventions, innovation and research for people with DS. She has represented the Foundation at many ethical and health service initiatives (e.g. NHS Fetal Anomaly Screening Programme (FASP) Information and Education Sub-Group) and spoke and presented at the World DS Congress in Glasgow July 2018. She is a steering group member in the Embracing Complexity Coalition to working to improve the lives of people with neurodevelopmental conditions (NDCs)-particularly more than one NCD. She is also a lead in the Embracing Complexity Special Interest Research Group. Dr Corcoran has also recently published a paper “The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders” and a book “Can I tell you about Down’s Syndrome?”.
James Carter is a young man with Down Syndrome (DS) and is a founding officer of the National Down Syndrome Policy Group. James is joint Patron of Positive about Down Syndrome with his wife Heidi. Recently they attended a family day and were a great encouragement to new parents. James has worked with People First Dorset on various projects. He now lives in Coventry and is working with Grapevine (an advocacy and campaigning group for people with disabilities) on their Health Team. He and Heidi spoke at the World DS Congress in Nov 2021 about their relationship, love and independent living to inspire other young people. They opened a zoom conference about the Mental Capacity Act and also spoke about their very fulfilled lives to encourage the attendees. James has been inspired by Heidi to set up his own facebook page – James Carter – Living Independently and to take up more public speaking opportunities.
Heidi is a young person with Down’s Syndrome (DS) who shares her experiences and campaigns via her Facebook page: ‘Heidi Crowter – Living the Dream’. Heidi advocates for better healthcare and independent living. She has assisted the NHS and other professionals to provide accurate information when telling prospective and new parents about DS. She recently challenged the Government in court about discrimination within maternity care. Heidi has also spoken at two World DS Congress about independent living and is the Patron of ‘The Ups of Downs’ support group. Most recently Heidi has been a founding officer of the National Down Syndrome Policy Group.
Nicola had a successful career in retail consultancy. Life changed when her son Tom was born in 2004 with Down syndrome. Appreciating the developmental needs of children with Down syndrome, Nicola formed The Ups of Downs in Warwickshire and created a network of support groups across the UK to disseminate best practice. Positive about Down syndrome was launched to support expectant and new parents around the reality of living with Down syndrome. PADS supports more than 1,700 expectant and new parents, delivers training to medical professionals and works with policy makers to challenge discrimination. As PADS grew it was brought under the charity DSUK and sits alongside the toilet training initiative #PantsforSchool supporting over 3,000 children in the UK to become toilet trained. In 2018 Nicola delivered a TEDx talk ‘How I nearly terminated my son through ignorance’. Nicola regularly speaks at midwifery events and has been published by the British Journal of Midwifery and the Royal College of Midwives.
Ken has spent his professional career working in the investment markets and has produced several films. Over 17 years he has promoted people with Down syndrome and raised awareness throughout both the investment and film & tv worlds. Leading on policy change with BAFTA around access and inclusion, his international award winning films, My Feral Heart and Innocence, have helped positively promote people with Down syndrome. Ken is currently BAFTA’s Accessibility and Inclusion Patron. A firm believer in equality of opportunity, his commercial real estate business leads in many areas around disability access and inclusion. As a trustee of Portsmouth Down Syndrome Association and a Founding Officer of the National Down Syndrome Policy Group, he has sought to change government policy, recognising that campaigning alone has not moved positive outcomes fast or far enough for people with Down syndrome. Ken has coached athletics with the Special Olympics for 6 years
Rachael worked in the education sector for 10 years with specialism in SEND before moving across to the charity sector following the birth of her youngest son Max. After joining the trustee board for Down Syndrome Education International she founded the award-winning charity Portsmouth Down Syndrome Association which has directly supported 100s of families and educational settings, and trains thousands of health and education professionals each year. Rachael actively campaigns for better inclusion and representation in all areas of society including the film industry and has produced award-winning films giving people with DS the opportunity to play the lead role including ‘My Feral Heart’ and ‘Innocence’. Rachael is a BAFTA patron for Accessibility and Inclusion.
Passion is what drives us