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 who is 18 and at university and our beautiful ‘Swan’ Jacob who is 13 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, Oxfordshire and Berkshire,
Swan UK

nottingham@undiagnosed.org.uk
I'm Helen and I live in North Nottinghamshire with my two children, Chloe, 15 and my Swan Steven, 12. I also visit the Oxfordshire and Berkshire areas often as I have family living there. 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.
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.
Jane Curzon

Jane Curzon

Parent Rep, London,
Swan UK

london@undiagnosed.org.uk
Hi, I'm Jane, mum to a delightful little girl, Emily, aged 6, and we live in the Richmond upon Thames area, South West London. When Emily was six months old we became increasingly concerned that our darling little baby wasn't meeting the typical developmental milestones and started raising concerns with the various health professionals. And so our journey began. Emily is non-verbal, has hypermobility, GDD and complex learning difficulties. She is under an expert team of professionals, attends a wonderful Special Needs School and is making steady progress. We found SWAN UK in 2012 - our lifeline! SWAN UK has given us immense support and stability in our lives. As a Parent Rep, I want to increase awareness of SWAN UK across London through working with medical professionals and reach out and support our community of families of children affected by undiagnosed genetic conditions. I feel extremely privileged to be a part of such an incredible network and exceptional team.
Kat Allen

Kat Allen

Parent Rep, West Midlands,
Swan UK

walsall@undiagnosed.org.uk
Hello, I’m Kat and I live in Walsall in the West Midlands with my husband Chris and our two children Holly-Star who is seven and our swan Eliza who is five. Eliza has a large list of difficulties and complex needs that seem to increase each year. Most prominently she has severe learning difficulties and requires constant care and supervision. Despite this she is a resilient (and stubborn) cheeky girl with a beautiful smile and giggle to boot. When we found out Eliza was a swan (before we knew about SWAN UK) the isolation, confusion and grief was incredibly difficult to bear. Finding local support groups exclusive to certain diagnoses was hard, as although welcomed, we never ‘fitted’ and talking to other carers about our experiences often left us bewildered as they did not experience the same as us. SWAN UK has been a lifeline for our family. We have finally found somewhere that fitted our complex non-diagnosis and knowing we weren’t the only family in the UK who faced this rather daunting future was a huge comfort to us. I am now keen to spread the word about SWAN UK to help bring some comfort to isolated families by bringing them together in a mutually supportive, understanding and comforting local community.
Marie Pritchard

Marie Pritchard

Parent Rep, Sussex,
Swan UK

eastsussex@undiagnosed.org.uk
Hello, my name is Marie and I live in a beautiful village in East Sussex with my wonderfully supportive husband Mike and our two amazing children Henry (6) and Dottie (4). When Dottie was around one years old we realised she wasn't developing as expected and she also started to have seizures. The consultant who had been keeping an eye on us 'just in case' since Dottie was born asked me if I worked as I was going to be very busy with appointments. He wasn't wrong; within six months we were being seen by several consultants in different departments at GOSH and doctors and therapists locally as well. When Dottie was around around two and half our genetics consultant told us it was highly likely Dottie has a genetic condition, probably rare, maybe as yet not discovered. Despite all we have been through so far this still came as a shock. It meant she wouldn't just grow out of all of this as lots of friends and family told us to try and reassure us. It finally dawned on me that this is why all the doctors we were seeing were scratching their heads and not giving us any answers. It was some time after this during one of my many late night google searches that I came across SWAN UK and realised we were not alone. Just that on its own gave some reassurance. I've stopped my internet searches for now as they are not helpful and cause more worry and sleepless nights rather than provide reassurance. Both me and my husband practise living in the moment, living for now. We have two wonderful children who are both so very happy and give us so much joy and teach us more than we ever thought possible everyday. We don't know what the future holds or if we will ever get a diagnosis but for now that's fine. We are not alone.
Tina Nesbitt

Tina Nesbitt

Parent Rep, North West,
Swan UK

northwest@undiagnosed.org.uk
Hi, I’m Tina and I’m from Stockport in Greater Manchester. I’m wife to Dave and mum to Sophie, ten, and my swan, Jack who is two. I’ve been a member of SWAN UK since 2015, having learnt about the network from another charity. Jack has a myelin deficiency which affects his brain and has had a follow-on impact on his development. He is very floppy, non-verbal and needs to be fed through a tube with a pump. When we had an initial diagnosis we were inundated with offers of help and advice, but when that diagnosis was deemed incorrect by specialists, the offers of help fell silent. I decided to volunteer as a SWAN UK Parent Rep because I want to help in any way I can to reach those that feel isolated and alone as I did when I started this journey and before I learned about the wonderful support that SWAN UK provides. I have always worked full time and have never done anything like this before. In my local area I’ve found that there is a lack of information for those affected by undiagnosed genetic conditions. If I can help to reach just one other person who did not realise that they were not alone, I will be very happy.
Tina Lowe

Tina Lowe

Parent Rep, Shropshire,
Swan UK

shropshire@undiagnosed.org.uk
Hi, I’m Tina from Telford, Shropshire. I live with my five-year-old son called Oliver and 13 pets that consist of two dogs, two cats, a parrot, a tarantula, a snake, a lizard and five chickens ... so not a quiet household! Oliver is non-verbal with Global Developmental Delay, sensory processing disorder, bilateral squint, chronic lung disease, balanced translocation of chromosomes six and eleven, enlarged tongue, dysmorphic features and autism. His life threatening issues come from having vocal cord paralysis, a floppy larynx and a restricted airway which means he can’t have liquids or lumpy food. Everything he has is pureed and he is also PEG fed. Oliver also requires oxygen when he gets any sort of cold or chest infection. For a long time I didn’t know where to find support regarding all of Oliver’s complex medical issues and joined separate groups for each illness that Oliver has, so when I found SWAN UK and realised that we weren’t alone it was such a huge relief and amazing to be part of a group that understand my stresses and issues. I realised that there are so many families struggling without support and so decided I would like to help and become a Parent Rep to reach out to as many families within Shropshire as possible.

Guest Bloggers

The Long Chain
This blog is about the most important thing in my life: my family. In many ways it is a fairly ordinary family. Our second child, our son, was born profoundly disabled. Benjamin’s condition has no formal diagnosis. This blog is called “the long chain,” a quote from Dickens’ Great Expectations: “That was a memorable day to me, for it made great changes in me." The day we chose to keep him was a day that changed our lives. (Whatever we chose, it would be a day that changed our lives). One day in our own long chain.
Rainbow Dust
An insight into our family life with two children with special needs - one who is undiagnosed and one who is diagnosed, the ups & downs & all the craziness in between.
Are You Kiddingney?
A Mum, A Dad, A Boy with Leaky Kidneys and Tyrannical Toddler.
The Inclusive Home
Architect and parent carer. Passionate about sustainable inclusive design. Blogging about our family life and our home adaptations project, accessible places, spaces and things.
Brody, Me  and GDD
Mummy to Brody & Sydney. Brody is undiagnosed with GDD, epilepsy, hypotonia, hypermobility and the cheekiest smile you've ever seen...
As Alex Grows Up
This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny.
Definitely Not The Waltons

Definitely Not The Waltons


https://definitelynotthewaltons.com/
The life and crimes of a mother of 4 . . 3 with additional needs.
Dylan's Story
Follow the ups (& downs) of our beautiful SWAN Dylan. With no diagnosis we have no prognosis leaving the world to be his oyster and anything is possible. At (almost) six years of age & on more daily drugs than an elderly person, potent injections, and having more tests, investigations and general aneathetics to count, day by day Dylan is defying the many many doctors involved in his care. Dylan is our six-year old – stuck in the body and mind of a baby. Dylan's one diagnosis is 'life-limiting' so we cherish every single day. Meet Dylan our real life Peter 'puzzle' Pan.
The World of Gorgeous Grace
Life with a child with an undiagnosed genetic condition. Campaigning for co-ordination of services #outofthebox
Orange This Way

Orange This Way


http://orangethisway.co.uk/
This blog is about life, different, the same - inspired by my youngest child who is a medical mystery and whose nickname is Orange.
SWAN Freddie
Following the life of our undiagnosed son Freddie. The ups, downs and everything in between.
Little Mama Murphy
Rambling about life with a 'medical mystery', an undiagnosed child: the good, the bad and the downright chaotic.
Things Are Never How They Seem
So, about me. Well I'm Claire, and have 4 children. Katrina is 12, Cameron is 10, Ayden is 7 and Rowan is 6. We all live, in a place we like to call the 'mad house' you have to be mad to step through our door!! We also have our trusty 'man's best friend' a husky, called Luca who you can trust.....to steal dirty socks! We also have a puppy, Olaf. There are a lot of medical labels attatched to our family which I'll get to later on. Our family has been to hell and back but we've met some of the most amazing and inspiring families along the way!!
Gingerbread and Sunshine
Life raising a funny and fabulous little boy with an undiagnosed genetic condition. Often telling it truthfully, sometimes pushing for change....and never baking
Complicated Gorgeousness

Complicated Gorgeousness


http://complicatedgorgeousness.co.uk/
A blog about a little boy with designer genes and a mum striding to the light at the end of tunnel. Even when things are complicated they can be gorgeous
It's all a pickle
Family life with a severely learning disabled child. Ups and downs. How he has changed us ... all ... forever!
Mama Unexpected
My journey into parenthood has been an unexpected one, sole parenting a medical mystery and her brother whilst always remembering to be a badass!

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