Our Team

The SWAN UK team is a mix of paid staff and volunteers who work together to support families across the UK, both online and locally. Most of our team is made up of our Parent Reps who are SWAN UK members who volunteer a few hours each week to act as a point of contact in their local area. You can find out more about the support they can offer here.

 

Our work is also supported by the wider Genetic Alliance UK team.  

The Team

Lauren Roberts

Lauren Roberts

National Coordinator,
Swan UK

lauren@undiagnosed.org.uk
My role is to oversee the coordination of SWAN UK, with a specific focus on developing on the ground support for families of children with undiagnosed genetic conditions in their local area. Coordinating SWAN UK builds on my previous experience working for other disability charities such as Kids and Centre 404. I have a Masters in Anthropology and Development studies and enjoy working with families to develop support their needs. I am also particularly interested in the role social media can play in preventing social isolation.
Miriam Ingram

Miriam Ingram

Digital Communications and Support Officer,
Swan UK

miriam.ingram@undiagnosed.org.uk
As Digital Communications and Support Officer at SWAN UK, my role includes managing relationships with external stakeholders including media and charitable organisations and healthcare professionals. I am responsible for generating communications for SWAN UK members and professionals as well as managing SWAN UK’s social media accounts. My work involves raising awareness of SWAN UK’s work and undiagnosed genetic conditions and I work closely with families to communicate their experiences as well as acting as the first point of contact for enquiries. I also enjoy organising events for SWAN UK families. I have a background in journalism, marketing and events and am passionate about giving people a voice and a platform to tell their stories.
Mary Instone

Mary Instone

Project Support Officer,
Swan UK

mary.instone@undiagnosed.org.uk
My role is to support the SWAN UK team in all their office-based work and to manage the registration of new members. My background is editorial work in trade publishing but I subsequently became involved in the charity world and worked for a national learning disability charity before I came to Genetic Alliance UK. I am particularly interested in the impact that raising a child with an undiagnosed genetic condition has on the family as a whole, and in finding ways to support parents and siblings in that position.
Kharishma Ballucksingh

Kharishma Ballucksingh

Fundraising Officer,
Swan UK

kharishma@undiagnosed.org.uk
My role is to promote community and event fundraising activities through our established channels, website, articles in our newsletters and e-newsletters and by writing fundraising blogs with fun and exciting new ideas. I am the point of contact for individuals who are taking part in events; I provide all the relevant information and ensure that they feel supported in everything they are doing. I am privileged to be given the opportunity to be part of the SWAN UK team and look forward to getting to know our supporters, families and most importantly our SWANS! I have had previous experience working with children and families something which I loved. I look forward to the new opportunities working at SWAN UK will bring.
Jo Burt

Jo Burt

Parent Rep, East Midlands,
Swan UK

eastmidlands@undiagnosed.org.uk
Hi everyone. I’m Jo, I live in a South Nottingham village with my husband Martin, eldest daughter Charlotte (16) and our beautiful ‘Swan’ Jacob who’s nearly 11 years old. Most of Jacob’s issues are around his profound learning disability and sensory problems but he also has ADHD, hypoplasia of the corpus callosum, hypotonia, and has Autistic behaviours. He’s non verbal and has mobility problems too. He will always need 24 hour care and he is often described by the medical profession as being “very complex”. I’ve tried other groups but I’ve not found that anyone really “gets” what we go through with our undiagnosed status. SWAN UK is the only place I’ve felt at home. I’ve thought for a long time that I’ve gained so many skills and experiences from having Jacob and from my work and I’ve had no way of putting them to good use – until now!
Helen Dennehy

Helen Dennehy

Parent Rep, Nottingham,
Swan UK

nottingham@undiagnosed.org.uk
I'm Helen I live in North Nottinghamshire with my two children, Chloe, 15 and my Swan Steven, 12. Steven suffers from medical and learning difficulties. Looking at Steven you wouldn't think that anything is wrong with him. He attends a local mainstream school, he's also a member of a local dance school along with his sister Chloe. He competes in dance competitions as well dance shows and loves acting. Before I found SWAN UK I felt alone in this journey, so did Chloe and Steven. Finding SWAN UK has helped us as a family to see that we're not travelling this road alone. I want to raise the profile of SWAN UK locally so we can reach more families so they don’t feel so alone.
Claire Walton

Claire Walton

Parent Rep, Northamptonshire,
Swan UK

northampton@undiagnosed.org.uk
Hi, I'm Claire and I'm a single parent of 4 children between the ages of 13 and 6. We live in Northampton, in the East Midlands. My 3 younger children are all undiagnosed. They have a host of medical issues, from coeliac disease, to gut dysmotility, food allergies to anxiety, a heart murmur, to growth disorders, hypermobility to chronic pain, hypoglycaemia, to reflex anoxic seizures, and hypothyroidism to good old fashioned reflux and a few learning difficulties thrown in for good measure, amongst others. My youngest son is currently the most complex of the 3, involving a regime of Total Parenteral Nutrition (Intravenous feeds) and enteral (tube) feeds. I have spent many years trudging my way through, alone, afraid, and isolated, trying to add myself to support groups, but never quite feeling like I fitted in, with everything a battle. Then I found SWAN UK and my life became less alone, I was a part of something, and I felt like I fitted. I am really excited to get started on this journey, and bringing SWAN UK to Northamptonshire!
Aimee Mann

Aimee Mann

Parent Rep, Warickshire,
Swan UK

warwickshire@undiagnosed.org.uk
Hi, I'm Aimee, I live in Warwickshire with my husband Ollie and our three children, Freddie our Swan who is five, Bella, three and Jago, one plus our Jack Russell, Teddington. Freddie's neuro-developmental problems were first picked up at my 20 week scan during pregnancy. Freddie is delayed in all areas of development, he also has low muscle tone, severe speech and communication difficulties including developmental verbal dyspraxia and an eye condition called Hypoplastic Optic Disc. Although at times his behaviour can be a challenge, mainly down to frustration, Freddie is a very funny, cheeky, loving and happy little boy. We all adore him and he loves his little brother and sister. Freddie was recently diagnosed via the DDD study - one single gene, found only in him, is faulty. TUBA1A. There are only a handful of other children known to have this diagnosis so it is still extremely rare and we remain where we are happy, with SWAN UK.
Lisa Beaton

Lisa Beaton

North Yorkshire,
Swan UK

northyorkshire@undiagnosed.org.uk
Hi, I’m Lisa, mum of 4 children, 3 of whom have special needs, 2 being SWANS and 1 having aspergers with sensory processing disorder. My youngest swan is our daughter, Amelia, who has an undiagnosed neuromuscular/neurogenic condition. She can run and jump one minute and not even sit up properly the next. She has a feeding tube for nutritional support and takes a raft of medications every day. She uses a wheelchair when fatigued and we do physio at home and at the hospital on a regular basis. Despite the ups and downs, she is hugely entertaining, determined and feisty. When I joined SWAN UK over 3 years ago, I discovered a group of like-minded parents. Although our children’s issues can vary hugely, we all share the common bond of being undiagnosed and not knowing where we fit in. I love the camaraderie, sharing the highs and lows, the knock backs and achievements and knowing that day or night, someone will be around to offer support.
Michelle Jones

Michelle Jones

Parent Rep, South Yorkshire,
Swan UK

southyorkshire@undiagnosed.org.uk
Hi I’m Michelle. I’m mum to William and James and we live in Barnsley South Yorkshire. Our Swan is James who is 5 and still mostly undiagnosed. From birth James was poorly with seizure like activity and respiratory problems. We just assumed that the first consultant that met us would know what was wrong, diagnose the issue, start treatment, get James better and our lives would get back to normal! The first 2 years of James’ life is just a horrible blur of tests, operations and hospital admissions. We were terrified, isolated, sinking fast and had no one to turn to because we had an undiagnosed child so we never ticked the right boxes. One day a nurse on the ward mentioned SWAN UK, which was a lifeline for us as we weren’t alone. There were other families out there that were fighting similar battles to us. The feeling of not being alone any more was empowering, I have made some wonderful friends who quite simply ‘just get it’. I have really enjoyed organising events and local meet ups whether it is visiting a family in hospital or just having a quick coffee with a swan mum who just needs someone to listen.
Louise James

Louise James

Parent Rep, Bristol,
Swan UK

bristol@undiagnosed.org.uk
Hello, I’m Louise James the SWAN UK Parent Rep for Bristol. SWAN UK (syndromes without a name) is run by the charity Genetic Alliance UK. It offers support and information to families of children with undiagnosed genetic conditions. I have three children. My youngest Scott who was born in 2010 has epilepsy, Global Developmental Delay, severe learning difficulties, hyper-mobility, low truncal tone and sensory processing disorder, but no overriding diagnosis to explain the cause of his issues. It took a long time for doctors to listen to my concerns when Scott was first born as all test results were coming back as normal and this made accessing support nearly impossible, until my health visitor gave me some information which led me to SWAN UK. I have chosen to volunteer for SWAN UK as a Parent Rep so that I can raise awareness in my local and surrounding areas and hopefully help families feel less isolated. My Background is in early years and I work part time in a local nursery as a Special Educational Needs and Disability support.
Jane Curzon

Jane Curzon

Parent Rep, London,
Swan UK

london@undiagnosed.org.uk
I’m Jane, Parent Rep for London. I live with my husband and Swan Emily.
Amy McMurdy

Amy McMurdy

Parent Rep, Bedford,
Swan UK

bedford@undiagnosed.org.uk
I’m Amy, mum to Olivia and Kian, and one of the Parent Reps for Bedford.
Emma Knagg

Emma Knagg

Parent Rep, Bedford,
Swan UK

bedford@undiagnosed.org.uk
My name is Emma and I live with my husband on the borders of Bedfordshire and Cambridgeshire. We have three children all with additional needs. I work part-time as a paramedic. My three children and I are all currently mostly undiagnosed. As a child I had lots of hospital appointments and met lots of professionals who looked at my various symptoms in isolation. It was never really considered that these may all have an underlying cause which connected them all. We also joined SWAN UK in 2012 after a fellow swan mum pointed us in the right direction, it's an amazing group where I have made lots of friends and there is a wealth of knowledge. I only wish I had known about SWAN UK in the early often very gloomy days. I look forward to meeting more SWAN UK families and helping to raise awareness of the additional challenges associated by being undiagnosed, be it a child or an adult like myself.
Sarah Moore

Sarah Moore

Parent Rep, Suffolk,
Swan UK

suffolk@undiagnosed.org.uk
Hello, I’m Sarah, Parent Rep for Suffolk and mum to my Swan, Rhys.
Danielle Myers

Danielle Myers

Parent Rep, Essex,
Swan UK

essex@undiagnosed.org.uk
Hi. I'm Danielle, mummy & full time carer to Dylan. Having an undiagnosed, medically complex child can sometimes feel isolating, lonely and very frustrating, that's where I can help. Based in West Essex I am the SWAN UK rep for Essex 'The Only Way is Essex!!' I’m hoping, from what I've learnt from having Dylan in the last (almost) 6 years I can use this knowledge in my role as a Parent Rep and can identify and reach out to families with undiagnosed children in the area, and raise awareness locally about being undiagnosed.
Sasha McDowell

Sasha McDowell

Parent Rep, Dorset,
Swan UK

dorset@undiagnosed.org.uk
Hi, I’m Sasha and the mum to Katinka and Eiden, We live in Bournemouth in Dorset. My now Graduate SWAN is Eiden and he is 5. My first meeting with the consultant was devastating. I was literally provided with a list of abnormalities/dysmorphic features and advised they were rechecking for chromosome disorders. As they had no diagnosis to offer we were just sent home to get on with it. We heard the term “he’ll probably always be a SWAN” from our cleft nurse. She wanted to prepare us for potentially not knowing what’s wrong. I didn’t really take it on board then. I blamed myself for being ill during pregnancy and requiring strong medications. I felt alone I remember joining SWAN UK and realising others were in the same position and fighting the same unknowns. I became more empowered in fighting for what Eiden needed and that it was ok to ask more questions and disagree with the professionals. I have chosen to be a volunteer parent rep so I can raise awareness of SWAN UK in my local region of Dorset & Hampshire.

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