(Lily’s story was shared by her father, Luke Malinowsky, to help other parents learn about the dangers of Macrophage Activation Syndrome (MAS) and new options to treat it.)
Lily Malinowsky was an energetic 1 year old, when last September she started having unexplained fevers and rashes, and was ultimately diagnosed with Systemic Juvenile Idiopathic Arthritis (or SJIA). She was started on Canakinumab (Ilaris) soon after diagnosis.
We finally have the dates for the 2019 SJIA Family conference: June 28th (friday) to June 29th (saturday). It will be held at Cincinnati Children’s Hospital in Cincinnati Ohio.
Previously, we had announced some dates in July for the conference. However due to hotel availability issues, we had to change those dates – these new dates (June 28th & 29th) are final – please update your calendar.
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.
We are eagerly waiting for our second Family conference coming up later this week. Here is a link to the conference flyer.
SJIA_Family_Conference_Flyer_May16
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.
read more
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
TThe following was written by Ella’s father, Frank Giaime documenting her 20-month journey with SJIA.
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.
www.systemicjia.org
Macrophage activation syndrome (MAS) and hemophagocytic lymphohistiocytosis (HLH) are complex to manage conditions. As a Foundation devoted to Systemic JIA and MAS, we are always looking for education...Max The Angry Macrophage | A Story about HLH | Cincinnati Children's
www.youtube.com
www.cincinnatichildrens.org/hlhMeet Max, and learn about the rare immune disorder called hemophagocytic lymphohistiocytosis, better known as HLH. In ...
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