Meet the Team
Chief Investigator
Chief Investigator
Dr Polly Livermore is the Chief Investigator for this study. Polly is a children’s nurse with 26 years experience of paediatric rheumatology in a variety of roles from ward nurse up to rheumatology matron, all at Great Ormond Street Children's Hospital. For a number of years Polly has been the Lead UK Paediatric Rheumatology Nurse, leading the ever growing group of amazing, expert nurses, with now over 100 in this group. Now Polly is the lead Health Professional for the Paediatric Rheumatology European Society (PReS). Polly’s PhD study investigated how children and young people experience Juvenile Dermatomyositis, crafting poetry using young people’s own words . Polly has been working with a number of national paediatric rheumatology charities and has helped to investigate how we can do more to support children, young people and their families through the experience of living with a rheumatological condition.
Research Team Group
Research Facilitator
Klaudia Kupiec
Klaudia has been working across various research roles at Great Ormond Street Hospital since she joined the Trust in 2021.
Most recently, Klaudia has been working as a Research Coordinator in the Rheumatology Research team supporting the JIA portfolio.
Klaudia has a background working in Child and Adolescent Mental Health Services (CAMHS) supporting children, young people, and their families in their mental health and wellbeing. Klaudia has a MSc in Child Psychology which she completed at Kingston University in 2017, and she has been working on various research projects ever since.
She has a keen interest in mental health research, early intervention and treatment pathways, and improving wellbeing of children, young people and their families. Klaudia and Polly will be working closely together to ensure the success of this project.
IT Research Systems Architect
TBC
Steering Group
Parent
Emily Earle
Emily Earle is one of the Trustees for CCAA - Kids With Arthritis (www.ccaa.org.uk) and volunteers full time for the charity supporting families who have a child or young person with JIA. Emily is also a Cluster Champion, represents CCAA at both ARMA (Arthritis and Musculoskeletal Alliance) and the HCSA (Health Conditions in Schools Alliance).
Emily has been involved in the collaboration of several JIA charities around supporting the mental health needs of families living with paediatric rheumatological conditions and helping to campaign for increased provision of psychology support within the healthcare team.
Emily also speaks to healthcare professionals at conferences and regional network meetings about the challenges faced by families, most recently speaking to represent the voice of patients and families at the British Society for Rheumatology annual conference. Emily is a passionate advocate for empowering families with the requisite knowledge and skills to aim to live a positive and informed life with JIA. This then ensures that the child or young person grows up with a positive outlook to their physical and mental well being as well as their healthcare journey.
Emily lives in London and has three children, one of whom was diagnosed with JIA at the age of 2.
Parent
Nathanael Bourns
Nathanael through his leadership role in the global development company DAI designs and executes strategies for positive change aligned to the global Sustainable Development Goals.
Towards this purpose, he has built and enabled effective teams in challenging contexts around the world, leveraging technology and data tools.
He has a broad understanding of processes of change in the social sector with experience in applied research and analytics for underserved populations.
Nathanael has a keen interest in improving information about rheumatological conditions among young people and applying his experience, where relevant, to support IMPACT.
Parent
Rachel Pulfree-Blythe
Hello, my name is Rachel and I live in Lincolnshire, I work at my local pharmacy as an accuracy checking pharmacy technician, I have worked in pharmacy since the age of 18.
I have two children, Sophia who is 4 years old and has JIA and Uveitis and Henry who is 1 year old. I have a good understanding of different medicines which helps when it comes to giving Sophia all her medicines and injections.
We are both on the JIA journey together and looking forward to meeting new people and learning new things along the way.
Parent
Eunice Kasaru
Hello my name is Eunice Kasaru and I live in Bolton. I work at Birtenshaw group as a support worker and I am also a student at Bolton university.
After working for the last 10 years at a care home as a carer, I decided to become a mental health student.
I have 4 children, Natasha, 24, Nancy, 21, Natalie, 15 and Natalia, 12. Natalia has found out about this chronic illness at the beginning of this year and is still trying to adjust.
She has been doing really well with help from the doctors and is recovering. We are looking forward to meeting more people and learning more things along this journey.
Healthcare Professional
Heather Rostron
Heather is a Senior Research Nurse at Leeds Children's Hospital and has worked in clinical research since the formation of the NIHR's 'Medicines for Children' Clinical Research Networks in 2006.
Heather developed and leads the Leeds Young Research Owls: a Young Person's Advisory Group for research.
Heather completed her MRes at the University of Leeds in 2018 and has continued her studies at Leeds by commencing her NIHR Doctoral Fellowship in April 2023. She was a NIHR 70@70 senior nurse research leader 2019-22; a national role collaborating with other senior nurses and midwives across the country.
Heather is thrilled to support the IMPACT study and is passionate about improving care and outcomes for children and young people.
Healthcare Professional
Emma Piepenstock
I am a Principal Clinical Psychologist in GOSH and a lead psychologist for rheumatology.
I have been working in rheumatology for the past 5 years and in paediatrics and clinical health for the past 15 years (covering various specialities such as sickle cell, burns, cleft etc).
I also work for UCL on the Clinical Psychology Doctorate as an Associate Clinical Tutor.
Healthcare Professional
Gemma Molyneux
Gemma manages the clinical informatics research programme at DRIVE, supporting clinical informatics research projects in Partnership with Higher Education Institutes across the UK.
She worked previously as a research manager in UCL where she managed national and international research programmes funded by the EU, NIHR and MRC.
She has significant expertise in regulatory frameworks that govern research, as well as research management.
Gemma obtained a First-Class honours degree in Pharmacology and Toxicology from the UCL School of Pharmacy, before going on to study for a PhD in Stem Cells and Haemopoiesis, funded partly by a fellowship awarded from The Triangle Trust.
As a post-doc researcher at the Institute of Cancer Research, Gemma studied ‘stem cells’ in Breast Cancer, before going on to investigate the role of monocytes in auto-immune diseases at King’s College London.
Children and Young People
Morgan Pawlett
Hello, my name is Morgan and I am from Suffolk. I had arthritis from the age of 7 until the age of 15.
I was prescribed methotrexate which helped me get back to a ‘normal life’ and went into remission when I was 15, just before my GCSE exams.
I am now 20 years old. I am currently training to be a Nursing Associate and have been a retained Firefighter since I was 18.
I am excited to be a part of this group and meet people similar to myself and learn about how arthritis can affect other people.
Children and Young People
Cameron Papantoniou
My name is Cameron, I was diagnosed with Juvenile Dermatomyositis back in 2011 when I was 9 years old. Now 21, this has been an ongoing challenge for me over the many years of living with JDM. I have had my highs and lows but throughout the years I have slowly worked on myself and taken time to understand this disease and who I am to become the person I am today. I have learnt how to live with this disease by taking extra care of my mind and being open and honest about my feelings with the people around me. The reason I wanted to join Polly and her team is to be an advocate to help and support the mental health of the patients and families affected by this disease as this hasn’t been focused on enough, and to also support towards finding a cure or new medications to make the lives of patients as normal as possible!
My goal is to share my experiences to patients and their families when they may feel unsure on what is next to come. Living with this disease isn’t easy for anybody especially a child, hopefully I can share some wisdom and offer support to the people affected (family included) and show that this disease doesn’t define who you are or what you can achieve in life. Sometimes it can be hard and you feel like you’re alone in this battle, you are not! Just always know that there are people that love and care about you and by talking about how you feel can help a lot.
Children and Young People
Natalia Kasaru
I am 12 years old and was diagnosed with Lupus at the start of 2023.
I have been coping with life and trying to get back in my normal routine.
Life with lupus is sometimes a struggle but I fight through it.
Children and Young People
Éire Byrne
I’m Éire, I’m 12 years old and I was diagnosed with Polyarticular JIA when I was 6.
I’m excited to be part of this project, and use my experiences to help others.
PLEASE CONSIDER BEING PART OF THIS STUDY
If you are interested in any of this work and especially if you would like to take part in any of the study parts, please contact the IMPACT team by completing the form.