We are excited to share that Systemic JIA Foundation now has 501(c)(3) status (per the IRS). How does that change things? What will not change is our total and complete focus on SJIA. What will change is that if you raise funds for us, or make a donation, you can simply use our IRS number, to get tax exemption.
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We are eagerly waiting for our second Family conference coming up later this week. Here is a link to the conference flyer.
The conference is organized by our foundation in collaboration with Rheumatology Dept., Cincinnati Children’s Hospital. Its on Jun 1st (Fri) – Jun 2nd (Sat), 2018 at At Cincinnati Children’s Hospital. Its open to all Systemic JIA families (children – both patients and siblings) are welcome. Additionally physicians and researchers interested in this topic are welcome to attend.
Thank you to the parents and doctors who attended our first-ever SJIA Family Day in Cincinnati, earlier this summer. You each played a major part in the event’s success. Everyone came together to learn, share knowledge and connect. For those who were unable to attend, we have gone through our panel transcripts and put together an informative Q&A that is presented below. If you want the full conference experience, or have questions of your own, head on over to YouTube to watch all the panel videos from the event, it’s possible a question you may have was answered during the event.
Weren’t able to make it to Family Day? We’ve got you covered with videos from each session, including a research update on SJIA and MAS, plus the popular Parent’s Panel discussion. Get the full conference experience by checking out the content. Plus, if you have questions of your own, it’s possible your inquiry may have been answered during the event. Head on over to YouTube to find out.read more
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.
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.