Top Tweets for #CURESJIA
SJIA/Still's Rare Disease Day ahead! Social Hour for patients and caregivers on March 8, 2025, 10:00 AM ET. Register on link below. #cureSJIA #rarediseaseday
π https://t.co/LAymjosLP9
We were so happy to Declan & his family at the Super Bowl. I hope this moment & witness a win by the Eagles brings him & his family enough Joy to sustain the hardest a moments of #SJIA & treatments. π #CureSjia #StillsDisease
For those who don't know, that was Declan LeBaron with Bradley Cooper. Declan has spent most of his life in the hospital with systemic juvenile arthritis. Bradley surprised him with tix to the Super Bowl.
In a world of narcissists, be more like Bradley. #SuperBowlLIX
β₯οΈβ₯οΈβ₯οΈ Declanβs mom shared this in our Systemic JIA parent network and itβs exciting to see itβs gone viral.
We are happy he got to attend the game. #CureSJIA #raredisease
Nah Iβm crying a lot.
I love @mdmotivator_
Is this what you voted for?
This is a researcher at one of the top children's hospital, dedicated to kids like mine who have a rare immune disease called SJIA. Their research has saved the lives of so many kids...
Is this what we want?
#sjiafoundation #curesjia
Per our university leadership, we are expecting to receive stop-work orders from federal agencies on all EXISTING, FUNDED NIH grants.
We are also being advised to prepare impact statements for any projects at risk of being cancelled.
#SJIA needs brilliant entrepreneurial minds to solve itβI admire them & my child benefits from their work. I'm naturally community-focused: connecting, cultivating, & supporting. It doesnt always earn me a seat at the table. Today, Im so grateful it has.
@sjiafoundation
#CureSJIA
Just starting! Already met some familiar faces but missing my friends from @sjiafoundation Foundation. Great to be here once more. #PRES2024 #cureSJIA
Happy Mother's Day to all the mothers out there caring for their kids with a rare disease. I hope you get to have a restful day filled with laughter and joy.
#MothersDay
#curesjia
Anakinra Bonfire tonight ππ₯
Just the boxes bc we disposed of the π earlier this week but he deserved a fun way to celebrate ridding the fridge of the stash that sat in fridge for over a yr *just in case* he failed his current combo.
#SJIA #CureSJIA #stills #medicaltrauma
My deepest condolences to the Callan family as they navigate the loss of Summer.
They connected with us when they were searching for a diagnosis (eventually landing with SJIA/ILD-PAP). Iβve always admired Summers families fierce efforts to advocate for her. #CureSJIA
WODC 2023 is over. Still proud and delighted with the work of these young people. And other people noted their hard work too. Here is the post from Julianne Mills, Rare as One CZI, on LinkedIn. @cziscience @sjiafoundation @OrphanConf #cureSJIA
And here they are!
YOUNG PEOPLE+SCIENCE+ADVOCATING FOR SJIA.
Is there a better way to bring awareness? Beatriz Peixoto and Gabriel Mekis, both UCSD students, thank you for this great work! #cureSJIA @sjiafoundation @OrphanConf
I had to tell my son yesterday that his 8 year old friend passed away due to complications from SJIA. Brianna left such an impact on this this world. #sjiasucks #cureSJIA #raredisease #autoinflammatory #lungdisease #death #GP4canitailusomethin #friends #pediatric #childhood
Our community is heart broken todayβ¦ π Hope the cure is not far. #curesjia
Simple article: One same disease, diverse phenotypes, multiple challenges #curesjia
https://t.co/j2Jq6GbdU3
Thank you @KomodoHealth Team for inviting the @sjiafoundation to this Panel. It is always great to share our thoughts and raise awareness for SJIA patients #cureSJIA
We were thrilled to have @rawoodfound, @sjiafoundation and @AAFANational join us at this year's Komodo Week to discuss how to improve patient outcomes through actionable insights. Watch the panel here! https://t.co/LKcGVyZBbO #insights #patientoutcomes
Some of the hardest moments happen when offering support to parents from other countries who have no access to treatment or have been given absolutely no information. The questions are raw & difficult. Sometimes happens in the US but at least we have resources to share #CureSJIA
Congrats to the @carrainc team, including fellow SJIA dad Vincent Del Gaizo, for organizing the first in-person mtg in four years. Look at all those parents of kids with #SJIA that were in attendance (including a few more virtually during the SJIA workgroup) #CureSjia #CARRA2023
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