Patient Families, Leading Rheumatologists and Pulmonologists, Researchers and Government Officials Come Together to Listen, Learn & Apply New Knowledge
CINCINNATI, OHIO (October 16, 2019): We are closer than ever to developing new, broad-based, successful treatment options for Systemic Juvenile Idiopathic Arthritis (SJIA), also known as Still’s Disease, and related complications, according to the Systemic JIA Foundation and families and experts who attended the Next Gen Therapies in SJIA & MAS Conference in Bethesda, Maryland, October 3rd and 4th.
“As the mother of a child impacted by the disease, I know SJIA and its related health issues can be devastating for children, adults and those who care for them,” said Rashmi Sinha, PhD, Co-Founder of the Systemic JIA Foundation. “Bringing SJIA families together with the scientists who are conducting cutting-edge research and clinical trials is a powerful and productive way to advance the cause of curing SJIA, and that is what this conference was all about.”
Scientists described promising new research on the main cause of mortality in SJIA: Macrophage Activation Syndrome (MAS) and associated lung disease. In addition, conference attendees heard from several parents of children who suffer from MAS and the toll it takes on their children.
A highlight of the conference was a presentation by Regina Minerva, the mother of Julianna, her daughter who was diagnosed with SJIA when she was thirteen months old. Ms. Minerva reported her child had persistent, smoldering MAS with lung involvement for a year and was in critical condition when she arrived at Cincinnati Children’s Hospital to participate in a clinical trial of emapalumab.
Emapalumab treats glucocorticoid-refractory macrophage activation syndrome (MAS) in patients with SJIA. Regina’s daughter’s participation resulted in significant health improvement and a better quality of life for her daughter after participating in the four-week treatment program. You can read Regina’s powerful story in more detail here.
Experts who presented their research and/or SJIA landscape analysis at the conference comprise a virtual “who’s who” in SJIA research, including experts from Cincinnati Children’s Hospital, the National Institutes of Health, Cohen’s Children’s Medical Center, Hackensack University, University of Pittsburgh, Sick Kids, Toronto, Utretch University and Bambino Gesù, Rome.
“The SJIA Foundation is dedicated to finding a cure for SJIA, and I know we are closer than ever to accomplishing that goal thanks to those who support the Foundation and the dedicated scientists who are committed to improving the quality of life of the 30,000+ children who suffer from this dreaded disease,” concluded Dr. Sinha.
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About Systemic JIA Foundation
The Systemic JIA Foundation exists to find a cure for Systemic Juvenile Idiopathic Arthritis or Still’s Disease, a serious and sometimes lethal disease. SJIA Foundation does this by funding and supporting promising research about the causes of SJIA and new treatment approaches, prioritizing research that will yield results in the next five years. The Foundation recently created a patient-driven contact registry to keep patients informed about the latest findings, clinical trials and research studies they can participate in. For more information visit https://systemicjia.org.
3584 Outlook Avenue, Cincinnati OH, 45208
Unfortunately this will not come
Sooner foe my only child REMI. She passed 5 months ago from MAS / HLH. She had just turned 20 years old in March and died May 6th 2019.
Dedicating my life to find a cure and understand this dreadful disease
My condolences to you and your family. (((HUGS))) I admire your determination and may the Lord continue to give you the strength to keep taking steps forward.