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
The proceedings of the NextGen Therapies for SJIA & MAS conference have now been published. In an open-access journal, so any patient can read and share.
www.systemicjia.org/nextgen-conference-proceedings-peds-rheum/
www.systemicjia.org
The proceedings of the NextGen Therapies for SJIA & MAS 2012 have been published in the July 2020 edition of the Pediatric Rheumatology journal online. The proceedings summarize the scientific session...Given the spread of Covid-19, we are regretfully postponing the SJIA Family Conference scheduled at the end of May. We are very disappointed but still hope to hold the conference at the end of summer (we will reevaluate in
a 2-3 months if end of July seems possible).
In the meantime, we will be launching the virtual program from the SJIA Foundation - starting with a virtual Expert Panel about Covid, featuring SJIA & Still's experts and your questions. The session will be conducted via Zoom so you can join via phone, tablet or computer. We will announce the details of this session soon.
Happy Rare Disease day from the SJIA Foundation. The rarest day in the calendar to celebrate the rare people in our lives who we fight for. And all the dedicated, brilliant doctors, other foundations, and parents we work with.
www.rarediseaseday.org/
Rare Disease Day 2020 - 29 Feb
www.rarediseaseday.org
The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a pub...
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