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
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.
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.
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.
We are creating a mailing list related to SJIA, MAS, Stills Disease and related diseases. It will be low traffic, only a few posts a month. It will not be for conversation – but it will be a way for researchers to directly reach patients. Additionally, it will be a way for patients to announce any initiative they might have worth sharing.
It will be low traffic and moderated.
Here is the final program for the Next Gen therapies conference. Post a comment if you have any questions.
Our next conference is next here! Here is the draft agenda for the Next Gen Meds conference. Its in Washington DC from October 21st to Oct 23rd.read more