Our hearts go out to the family of Ethan Cox, a young boy in Cleveland who passed away from SJIA related complications over the holidays. His parents colleagues have organized a memorial fund in his honor, and have given generously. Please contribute if you can. Our mission is to find therapies so that tragedies like this don’t happen.
Most SJIA kids whose disease is not controlled by biologic drugs take glucorticoid steroids of some kind (prednisone is the most common). Steroids work well in controlling inflammation, but come at a tremendous cost: stunted growth, fragile bones, cataracts, and weakened muscle are some of the side-effects. But we put up with it because the alternative of uncontrolled SJIA is worse.
Eric Hoffman, a researcher in another childhood disease (Duchenne Muscular Dystrophy), gave the keynote at our next-gen SJIA treatments conference in October. He is leading an effort at Reveragen to bring a steroid replacement called Vamorolone (generic name VBP15) to market. The goal of the drug is to replicate the good effects of steroids (primarily their anti-inflamatory effect) without the side effects.read more
Preliminary program for SJIA Family Conference is now online. Check it out!
(Registration coming soon)
www.systemicjia.org/sjia-family-conference-virtual-2020/
SJIA Family Conference (Virtual Edition) - Systemic Juvenile Idiopathic Arthritis Foundation
www.systemicjia.org
SJIA Family Conference (the Virtual Edition) Organized by: Systemic JIA Foundation Where: Virtually When: Dec 2nd – Dec 4th, 2020 | 8:00 am – 12:00pm EST Global Times: New York 8am – 12pm | L...No, you did not imagine it. We did all get together, and celebrate the foundation birthday in a hotel. Look at everyone crowded together. I miss 2019!
Missing your SJIA family? Its almost time for this years Family conference! www.systemicjia.org/save-the-new-dates-for-sjia-family-conference-december-2-3-4-2020/
Registration coming soon.
3584 Outlook Avenue, Cincinnati OH, 45208
