Kineret is the most common biologic drug for treating SJIA. It’s a very effective medicine. However, since it has a short half-life it requires daily injections. Worse, since it comes packaged in syringes, taking a dose higher than 100mg requires multiple shots! There has to be a better way ;->
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Latest From the Blog
Calling all Systemic JIA Families – join us at SJIA Family Day!
Throughout the SJIA journey, we have met so many families who have kids with SJIA and have made deep connections with them. We have mostly met them online since there are no conferences or other events focused on SJIA where one can meet many SJIA families. We thought it was high time to organize a day devoted to SJIA, to bring together families, doctors and other medical experts focused on this disease.
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Neuroimmunity: Electrical stimulation of the vagus nerve for treating arthritis
There’s an interesting article in Scientific American about a new trial for Rheumatoid Arthritis. The treatment involves a small pacemaker-like device that delivers tiny electrical shocks to the vagus nerve, a nerve that runs down the neck from the brainstem to several major organs, including the heart and gut.
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SJIA Foundation stands with other patient organizations in opposing the American Health Care Act
The US House of Representatives passed the American Health Care Act yesterday, May the 5th, 2017. If this bill becomes law, it will impact the health care of millions of Americans. It will be especially hard on children and adults with rare diseases, including children living with Systemic Juvenile Idiopathic Arthritis (SJIA).
The Systemic JIA Foundation joins numerous other patient groups in opposing this legislation. This law could have disastrous consequences for children living with SJIA and other Autoinflammatory Diseases, who depend on expensive medications to keep the disease under control. Some of the potential impacts of the AHCA are:
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How patient communities and venture philanthropy can drive the development of treatments
Eric Hoffman gave a great talk on how the community around Duchenes Muscular Dystrophy has driven research into treatments. This talk was very inspiring and touching, especially given the context of the first treatments for DMD recently being approved by the FDA.
Eric is the founder and CEO of Reveragen, which is developing Vamorolone, a replacement for conventional steroids. It is targeted at DMD but is also a potential treatment for SJIA. The drug was recently fast-tracked by the FDA.
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Welcome to our new Patients Advisory Board!
As we grow the foundation, we added a Patients Advisory Board so we could have better representation of the SJIA patients helping us make decisions about how best to serve our goals of finding a cure for SJIA. We have added three parents of kids with SJIA. We have been working with all three of them for some time, and know them well. They understand the purpose of the foundation and its philosophy and approach towards helping move SJIA treatment forwards.
The three parents are: Leah Bush, Sabrina Dunlap and Kari Cupp. You can learn more about them here.
Now that they are on board, you can expect us to pick up momentum in organizing more events and fundraising to support SJIA research.
Getting Kineret-Anakinra approved by your insurance company
The first biologic medicine that most patients are prescribed for dealing with Systemic JIA is Kineret (AKA Anakinra: Kineret is the trade name, Anakinra is the scientific name). But a fair amount of the time, the health insurance company will push back, citing the fact that kinaret’s FDA approval is for NOMID and does not mention SJIA at all. This happened to my family last month, when Anthem insurance denied approval of Kinaret to my son, despite the fact that he had already taken the medicine in the past and had responded positively to it, and he is dependent on IL1 blockade for even partial control of his systemic systems. Only due to heroic acts of paperwork on behalf of our son’s rheumatologist (Dr. Alexei Grom) was the medicine finally approved (we had to go for independent review by a third party, and have it judged by the State Insurance review board).read more
IL 18 Binding Protein (tadekinig alfa) gets Breakthrough Therapy and Orphan status from FDA
The Swiss biotech company AB2Bio has been working for some time on tadekinig alfa, a medicine that blocks the IL18 pathway. Today they received news that the medicine has been granted both “Breakthrough Therapy” and “Orphan” status by the FDA.read more
Ethan Cox Memorial Fund
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.
Vamorolone: A steroid replacement with fewer side effects
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
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