WORD Day 2021 Webinars

Clare Pain is a Paediatric Rheumatologist working in Alder Hey Children’s Hospital in Liverpool, UK. She is particularly interested in improving the care of children and young people with Behcets and scleroderma. This includes research and she is an Associate Director of the Experimental Arthritis Treatment Centre for Children in Liverpool.

Fun fact about Clare: The scariest thing I have ever done was dive under the ice in the Alps in a dry suit. Very cold, brrr.

Pediatric rheumatologist. Head of Section. Pediatric Rheumatology Unit at the Sant Joan de Déu Hospital. Doctor in Medicine from the University of Barcelona, of which he is an associate professor. Since 2013 he has been the director of the master’s degree in Pediatric Rheumatology at the same university. Dr Antón is deeply interested in the education and training of new generations of professionals, as well as in the dissemination of knowledge about pediatric rheumatic diseases before families and society in general.

Fun fact about Jordi: In his private life Jordi is active in the fight for LGBTI rights, with his husband he is the father of an 11-year-old boy. He loves opera, travel, and long conversations with friends. He looks forward to a new post-pandemic era that will allow us all to regain talks and hugs.

Nick joined London’s Evelina Children’s Hospital July 2014 to set up new services in paediatric rheumatology and chronic pain and develop a regional network for South London and South East Coastal Region. Building on his experience of setting up Oxford’s tertiary service for Thames Valley, Nick focuses on holistic, cost-effective care with dedicated clinics for teenagers and young adults and a rehabilitation service for young people in chronic pain. Nick enjoys service innovation, teaching and research, and has supported service development at a national level in various roles. He is associate editor for the Cochrane Pain, Palliative and Supportive Care Review Group (PaPaS).

Eve is a Paediatric Rheumatology trainee at Alder Hey Children’s Hospital in Liverpool, and  an NIHR Academic Clinical Lecturer at the University of Liverpool. She is one of the founding members of WORD Day. Eve has a clinical and research interest in Lupus in children, and is working towards the development of a treatment to target clinical trials.

Fun fact about Eve: Eve speaks fluent Greek as her mum is from Athens. Eve has learnt the skill of greek hospitality from her relatives, and loves having a lot of people visit and stay! COVID has been a challenge! 

Main research fields: rheumatic diseases in children, autoinflammatory diseases, vaccination in pediatric patients with rheumatic diseases, autoimmunity and vaccination.

The interesting part of my work in the field of vaccination is that I started with research of autoimmunity following vaccination. We tested autoantibodies after influenza vaccination on long term, 6 months following vaccination. Induced autoantibodies were without clinical significance. So one might say that I started my career in vaccinations as vaccine skeptic.

Wendy Costello is Chair of iCAN and ENCA. She represents ENCA on the PReS council. Wendy is also patient engagement co-lead on the Global Rheumatology Alliance and Chairs the UCD Centre of Arthritis Research steering committee.

She is a member of the WORD Day organising committee and is very proud of the growth of it over the last 3 years.

Fun fact about Wendy: She is mum to Caoimhe 16 and  Niamh who is now 21 and was diagnosed with JIA when she was 3. Passions in life Formula 1, friends and running.

Sammy Ainsworth is based at Alder Hey Children’s Hospital in Liverpool where she is the Young People and Family research Co-ordinator for the Clinical Research Facility and the Experimental Arthritis Treatment Centre for Children.

Sammy is the mum of Sophie who was diagnosed with the autoimmune disease Lupus at the age of 14.

Sammy is a trustee of both the charity Lupus UK focusing on young people and families who live with the condition and the young person led charity RAiISE which supports children and young people living with an invisible illness in school. Sammy has been a member of ENCA for a number of years.

Sammy is passionate about parents and young people having a real voice in both research and health and is pleased to see how Word Day has evolved since being involved from the beginning.

Fun fact about Sammy: Sammy’s passions include travel with her favourites places being America, The Greek Islands and Scotland. She loves skiing and anything to do with the sea.

The other big love in her life, apart from her family and friends is her golden retriever Rosie!

Chris was diagnosed with Any losing Spondylitis as a young doctor, despite suffering from symptoms from his early teens. This influenced him to try to understand paediatric rheumatic diseases and to pursue a career focused on educating healthcare workers and providing care for children rheumatic diseases, especially on his home continent Africa. He completed paediatric rheumatology training in Leuven, Belgium and came home to South Africa in 2010 to establish a clinical, research and training unit.

Fun fact about Chris: He is better at Paediatric Rheumatology than he is at his 3 major hobbies of boomerang throwing, trail running and the guitar. Chris has a theory that gravity is getting worse, thus making two of his hobbies a lot harder in recent years.

Dr Janet E McDonagh is a clinical senior lecturer in Paediatric and Adolescent Rheumatology, Centre for Epidemiology Versus Arthritis. She is currently looking after young people with rheumatic conditions at the Royal Manchester Children’s Hospital and doing research around how such conditions affect their lives – particularly around their education and careers, transitional care and pain – at the university of Manchester.

She also runs the national youth advisory panel – Your Rheum – for the Barbara Ansell National network for Adolescent Rheumatology which she also chairs.

At a European level she is a faculty member of Euteach which aims to support the training of health professionals in young people’s health.

Fun fact about Janet: She is a proud holder of an Irish passport – and hopes to one day retire to Ireland to a house by the sea and write poems and create art!

A decade of being an ‘arthritis mom’ has given Catherine an insider’s view of living with autoimmune disease. She was struck by how relentless and overwhelming it can be, even with access to every specialist, treatment, and therapy her daughter needed. Now that the disease is well-managed, Catherine finds it easier to be philosophical and even grateful for the lessons of the past ten years. She hopes she has learned enough to weather the next round of flares, should they come.

Catherine started volunteering for Arthritis Kids South Africa in 2017. After a slow start followed by a long think, she and her husband decided to register the previously informal group with the objective of no child in South Africa suffering unnecessary pain or disability from untreated JIA. The new board comprises parents of JIA patients and paediatric rheumatologists, balancing the medical aspects of chronic disease with the realities of living with one.

Fun fact about Catherine: In the distant past, Catherine worked in marketing and communications. She is mom to Ella (12) and Ethan (10), wife to James and beloved companion of Jinx the Yorkshire Terroir. She lives with her family in Johannesburg, South Africa.

Ella was diagnosed with JIA in 2010, just before her second birthday. Over the following ten years she endured countless doctor visits, needles, medications, therapies, double knee surgery, splints, crutches, a wheelchair, and a bout of TB.

Her disease is now well-managed by a combination of DMARDS, and the twelve-year-old that has emerged from the battle leaves her parents bursting with pride.

Fun fact about Ella: Ella loves all things literary and dreams of becoming an author. She plays the drums, loves to draw, mountain bikes with her family, and is looking forward to learning to sail with her dad.

Klaire is the Young People and Families Service manager for Scotland at Versus Arthritis, leading a team of staff and peer volunteers who work with young people up to the age of 25.  Focussing on supporting young people to live well with their condition, promoting self-management through peer support, and the transition and transfer from Paediatric to Adult services.  Klaire also works alongside rheumatology teams across Scotland to help support their young patients to live well with arthritis and related conditions.

Klaire has had arthritis from a young age, and this drives her work with young people to help them get the right care and support to live life to the fullest with their condition.

Fun fact about Klaire: She lives on the coast with her dog Tom and will always be found wearing odd socks!

My name is Niamh Costello, I am 21 years old and I am from Ireland. I was diagnosed with Juvenile Idiopathic Arthritis 18 years ago. I am currently a final year undergraduate student studying Primary School Teaching.

I have been closely involved with the charity iCAN – Irish Children’s Arthritis Network since its launch, 6 years ago. I am a mentor for the charity and my role involves supporting children and teenagers who are affected by rheumatic diseases. I am also a member of the youth panel for iCAN and I am passionate about spreading awareness of my condition in the hope that it might help others who are affected by JIA.

I have also been on the youth panel for the Teens Taking Charge research programme in association with NUIG. Along with this, I am a mentor for the Lending an Ear part of this project.

Fun fact about Niamh: My hobbies included swimming, going to the gym and spending time with friends.