This weekend will be the first ever SJIA Family day. More than 80 people are registered to be there – parents, pediatric rheumatologists from Cincinnati Childrens and anyone else interested in the disease. Children will be there as well and we have a room for them with Child Life helping out.
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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 ;->
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.
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.
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:
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.
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.
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
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.