Ella was born on a Tuesday in summer of 2011. It was like any warm, late summer day in San Diego, but when she entered the world, it was clear to me it was different. The first time I held her, I was studying her features and it was like looking in the mirror. She had long eyelashes, beautiful complexion, and dimples that would grab attention from admirers and grandparents. Her health was good and everything seemed normal.
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We finally have photos from the SJIA Family Day last Saturday (July 22nd) at Cincinnati Childrens Hospital. These are just the initial set of photos – we will be posting more soon.
Go here to view the rest of the photos.
For so long, Systemic JIA or Stills Disease has been in the shadows that we can hardly believe that that there is now a movie about this disease. And its not a small-time documentary, it’s the summer’s sleeper box office hit! “The Big Sick” is a romantic-comedy in which Still’s Disease (the adult version of Systemic JIA) figures prominently. Actor Kumail Nanjiani (from the TV show “Silicon Valley”) co-wrote the movie with his now wife, Emily Gordon about their relationship. Nanjiani also stars in the film, with Zoe Kazan playing Emily.
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.
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.