The inaugural North England Juvenile Dermatomyositis (JDM) Family day was held at the Chill Factor on Saturday 19th October 2019. Young people with JDM, their siblings and families were invited to come along and meet other young people and families in the North of England. The young people were invited to enjoy snow activities, a science workshop, arts and crafts and soft play, as well as enjoy a fabulous lunch! There was a programme of speakers invited and we were lucky enough to have Polly Livermore, specialist nurse from GOS come and talk to everyone about her current research as well as hearing from Jack, one of Manchester’s patients talk about the lived experience of having JDM and entering adulthood. A panel of experts were on hand for young people and families to ask a myriad of questions and we were lucky enough to have Dr Phil Riley and Dr Emily Willis and Dr Alice Chieng from Manchester (RMCH), Dr Liza McCann from Alder-Hey and Dr Tania Amin from Leeds as well as Polly from GOS and Verna Cuthbert Physiotherapist from RMCH.
The day was well attended with over 14 families joining us for the day. Good fun was had by all and we are currently collating the feedback but initial impressions are that it was very well enjoyed and many families made connections with others and received valuable support.
The day was made possible by Versus Arthritis and Remission charity funding to whom we are indebted. Please may we say a big thank you to all the clinicians who gave up their Saturdays to make it a success.
JDM Family Days are being organised around the UK.
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Ongoing support for the UK-wide JDM research study is essential for us to understand this rare disease better, and ultimately achieve better outcomes for patients. The research and clinical teams involved in the Juvenile Dermatomyositis Cohort & Biomarker Study around the UK would like to say a huge thank you to all the families who have been involved in fundraising for research into JDM. The recent donations will go towards funding our study coordinator, which is a pivotal role in keeping this unique study going, which is one of the largest registries in the world. The person in this role is responsible for maintaining the website and database for the study. The study coordinator supports researchers and members of the clinical teams across the UK who are working with the study, as well as international researchers who are collaborating with the study. They assist with collection of data and samples for the study, as well as administrative tasks including ranging from grant reporting to organising study committee meetings and a national meeting that brings together researchers and members of the clinical teams involved in the study from around the UK. This individual also serves as a first point of call for public and patients who may contact the study through the website, https://www.juveniledermatomyositis.org.uk, providing an invaluable signposting and information role for families and patients in need of help.
Latest information on guidance for patients and return to school, October 2020