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, a 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 was 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.