Cure JM Foundation 2016 Annual Conference Recap

Focus Group on Upcoming Research

In this standing-room only session, over 35 parents met with representatives from Idera Pharmaceuticals, a company that has developed a NEW drug for Dermatomyositis. The medication is already in clinical trials for adults with Dermatomyositis, and if it's successful in adults, the drug could move to clinical trials in Juvenile Myositis.

Jim Baker, Executive Director of Market Development, and Kate Tighe, Manager of Patient Advocacy, were the two representatives from Idera Pharmaceuticals who led this session. Jim and Kate were able to hear straight from the parents what it's like to have a child with JM and collected some very important feedback they will take back to their team. Understanding parent and patient needs and desired outcomes are key components in drug development and clinical trial design. Thank you to Jim and Kate and all of the parents who participated in this important session.

CarraDuring this session, parents also provided feedback to the representatives from CARRA, the Childhood Arthritis and Rheumatology Research Alliance, who would like to understand parents’ concerns and questions about their children's future as adults. This information will help CARRA researchers design a survey for adult patients with Juvenile Myositis in order to better understand long-term outcomes of patients diagnosed with Juvenile Myositis.