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.
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.
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.
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.

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!

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