connecting the dots to find a cure for Systemic Juvenile Idiopathic Arthritis

DONATE
Blog
Home > Archives for Rashmi Sinha

Systemic JIA Family Conference this week & Schedule for first day

| | 1 Comment

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.

 read more

Presentations & Videos from SJIA Family Day at Cincinnati Children’s Hospital

| | Leave a Comment

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

Calling all Systemic JIA Families – join us at SJIA Family Day!

| | Leave a Comment

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.
read more

Welcome to our new Patients Advisory Board!

| | Leave a Comment

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.

Low traffic, announcement only mailing list

| | Leave a Comment

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.
read more

Our Twitter Feed

Our Facebook Page

Systemic JIA Foundation

11 months ago

Systemic JIA Foundation
We are so proud of our rare gem - Oonagh, a talented artist at the age of 5. She is a finalist in the Rare Artists competition. Please watch the video as she talks about the art she created. We are sure she will capture your heart the way she captured the heart of the SJIA community! 💞 #CureSJIA ... See MoreSee Less

Video

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Systemic JIA Foundation

12 months ago

Systemic JIA Foundation
Hearing reports of SJIA & adults Still's patients who cannot get Actemra since its being diverted for Covid patients.Why should needs of a child or adult with life-threatening disease, long term dependent on a drug, be less important than an unvaccinated person who chose not to follow medical advice?SJIA and other patients with immune diseases should receive first priority with the drugs they are dependent on to keep disease in control. #CureSJIA ... See MoreSee Less
View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Keep in touch. Sign up for our email updates.

Contact Us

Location 3584 Outlook Avenue, Cincinnati OH, 45208

Email Address info@systemicjia.org

Quick Links

SIGN UP FOR EMAIL UPDATES

Disclaimer

This website is provided for educational and informational purposes only. Systemic JIA Foundation is not engaged in rendering medical advice or professional services and this information should not be used for diagnosing or treating a health problem. The site authors and the content providers make no representation or warranties, expressed or implied. Providing links to other websites does not imply that Systemic JIA Foundation endorses the information or services provided on those websites. The organizations operating those websites are solely responsible for the content found on their websites.