Myositis Conference Joins Researchers, Patients
Photo: Rita Volochayev
The second Global Conference on Myositis (GCOM 2017) brought together myositis researchers, patients and support group representatives from around the world. Dr. Fred Miller chaired the steering and scientific committees for the recent event, which took place at the Bolger Center in Potomac. Miller is head of the environmental autoimmunity group (EAG) at the National Institute of Environmental Health Sciences.
Myositis is a rare, multi-symptom disease that can affect people of all ages and involves dermatology, rheumatology, neurology and pulmonary disease, among others. Also known as idiopathic inflammatory myopathies, myositis consists of a diverse group of complex diseases that result from chronic muscle inflammation.
“Our main goal was to share state-of-the-art research covering all forms of myositis and to include basic researchers and all specialties caring for myositis patients,” said Miller. “It was a great success and laid the groundwork for important future collaborations.”
“The conference focused on trainees and young investigators,” said Dr. Lisa Rider, deputy chief of the EAG and a leading researcher of juvenile myositis. Six trainees received abstract awards and made oral presentations, she noted. The event also offered a special mentoring session on how to become successful myositis researchers.
Dr. Hanna Kim, an NIAMS clinical fellow, received an outstanding abstract award for her research on juvenile dermatomyositis.
“This gave me the chance to give a plenary presentation,” she said. “I got a lot of thoughtful feedback from international experts.”
GCOM 2017 highlighted the involvement of patients and their advocates. Two major support groups, the Myositis Association and the CureJM Foundation, participated.
“As a rare, neglected disease, myositis doesn’t get much official attention or funding,” Miller said. “Patient support groups serve an important function in raising awareness and funding for research.”
Dr. Adam Schiffenbauer, an EAG staff clinician, heard satisfaction expressed by many of the patients at the conference.
“A lot of the program was directed at addressing what patients want and what we are doing to support them,” he said.
NIAMS director Dr. Stephen Katz and Dr. Andrew Mammen, a researcher in the NIAMS muscle disease unit, were also involved.
With 310 participants, the meeting was twice the size of the 2015 inaugural conference in Stockholm. Building on the success of this year’s conference, the next of the biennial series, GCOM 2019, will take place in Berlin.
Ongoing clinical studies led by NIEHS, NIAMS and others are recruiting volunteers. In addition to support from NIEHS, the conference received funding from NIAMS and NINDS, as well as 20 patient support group and corporate sponsors.—John Yewell