2018 JA Conference Reflections

IMG_1606Our family was excited to attend the 2018 JA Conference in Washington, DC, thanks to a travel award/scholarship from the Arthritis Foundation.  We traveled in on Wednesday evening, since I was scheduled to be a part of the Externally-Led Patient-Focused Drug Development Meeting.  I’ll write more about that in another post.  My family got out and enjoyed a bit of DC on Thursday while I participated in the FDA meeting, but we reconnected in the evening for the JAC kick-off!

It was the first time my husband was meeting my national JA family, and I think it was a bit overwhelming.  It was for me.  I felt like I was constantly hugging people, then turning to introduce Rheumatology Daddy!  I’m positive he only remembers maybe four names of the hundreds I introduced him to over the course of the conference ;).  The opening dinner and session was fun….all the kiddos were in their superhero outfits and families were moving around the vendor tables gathering those stamps on the “passports”.  By the time the Mom’s Networking Session came around, I had been at it since 7am, so my “word” was “exhausted” (I think….I was brain-foggy by then, so can’t honestly remember what I wrote down).  It was the first time the kiddos went off to their respective rooms to hang out with other kiddos, and it was the first time Kevin had participated in a Dad’s Networking Session.

The Mom sessions are always so awesome.  It’s so fun finally putting real live faces to the Facebook profile pictures and names we see all the time in our online network.  The theme of the night was being tired and excited, and you could feel it in the room.  Some moms were late because their kiddos didn’t want to be left with the childcare (which always changes by the next day, once they realize it’s super fun!), and one poor mama was late because she got stuck on an elevator on the 7th floor with her son’s service dog! The lovely ladies who ran this session passed out pop-sockets for our phones, which I’m both grateful for and HATE because I’ve always wanted one, but now I fidget with it ALL THE TIME and annoy even myself!  We chatted about expectations for the weekend, and about the super secret Dad sessions and what they might get out of those.

IMG_1607Friday morning came very early for our family.  We participated in an assortment of sessions through the day, and they were primarily focused on research.  I’m SUPER involved in PR-COIN, CARRA, and PARTNERS, so a lot of what was being discussed was the work I am involved in on a daily basis.  I was excited to hear that many parents planned to return to their pediatric rheumatology sites to encourage them to join PR-COIN if they haven’t already, and a lot of families planned to register for PARTNERS, so we could reach out to them with research opportunities.  Networking events like the JAC always give our registrations a huge boost, and we are thankful for all the people willing to lend some time to completing surveys and assisting with research work.  Another favorite part of Friday at Conference is the Networking session in the afternoon where we sit with other people from our state.  I could spend HOURS just with the other folks from Ohio.  We are so blessed in our state to have LOTS of pediatric rheumatologists.  After Networking, we met up with some family from Maryland for dinner and brought them back to the hotel with us for the Family Dance Party!  My girls had a blast dancing and my 18 year old nephew thoroughly enjoyed the music ;).

Saturday was my most anticipated session on comorbidities including TMJ arthritis and uveitis.  Megan’s large joints have been in medicated remission for several years now thanks to our amazing biologic, but she currently struggles with active disease in her left TMJ.  We have an MRI scheduled for November and are very hopeful to find nothing (fingers crossed).  We learned so much in this session, both about managing the jaw, and about uveitis.  I hope a future study in uveitis within the CARRA and PR-COIN registries will lead to more accurate numbers of patients affected with severe eye disease so we can start to sort them out and treat more aggressively.  We have a plan in the event that Megan’s jaw MRI in November does not come back favorably.  We can move forward with early orthodontics and add TMJ physical therapy.  I was happy to hear that with early orthodontic interventions, a lot of times surgery can be avoided (again, fingers crossed).  Later in the day, I participated in a Medications and Remission session where we shared the results of one of my collaborative projects on Parent/Patient Perspectives on Stopping Medications.  It was fun to share our results and help answer questions from the audience.  While we were busy learning, our kids got to meet Matt Iseman from American Ninja Warrior.  They LOVED him!!

IMG_1620On Saturday evening, our family enjoyed a DC at Dusk tour of the monuments.  It was AMAZING.  Several other JA families were with us on the tour and it was fun to see the kiddos out and enjoying DC and learning some history.  I had never been to the Jefferson Memorial and it was beautiful!  The tour wasn’t over until 11pm and our kiddos didn’t get to bed until midnight after showers, so I knew Sunday morning might be rough.

Sunday was the beginning of the good-byes and the dreaded and amazing Mom’s Closing Session.  I both love and hate this session because it stirs up some intense emotions and I’m not typically an emotional person.  I mostly love it because I have one last opportunity to connect with moms from all over the country walking the same road as I am.  I made a commitment at this session to schedule a haircut for myself when I got home (which I did…..and can’t wait!) as part of self-care.  I also promised myself I’d take a nap, which I did on the drive home! 🙂  Another promise I made to myself was to be sure to take all the networking I was able to be a part of through the weekend and bring it back to all the research I do.  I often represent the “patient family voice” on projects and am very nervous that I am speaking for the collaborative of parents, and not just myself.  I hope that by networking with other amazing families and learning about their journeys, struggles, and successes, that I can speak for more families in my work.

I also LOVED the closing session and the kids’ parade.  It so fun to see the kids with their new friends.  I’ve met Chris Nieto several times at CARRA meetings, but I had never heard their daughter’s story, nor had I met his wife, Erica.  Their talk was emotional, motivating, and inspiring.  I really enjoyed it and there weren’t many dry eyes in the house!  Matt Iseman is so much fun every time we hear from him and the kids just love it when he joins us.  New this year was the teen program presentations and I loved the #jababyfoodchallenge!  We closed with words of inspiration and so much support and love in the room.  It was a wonderful wrap-up.

Overall, my absolute favorite thing about the JAC is the networking.  For myself, meeting other moms and families and putting names to faces.  For my husband, realizing he has a place in all this madness, even though his wife is insanely involved way over her head.  The very most important thing for our family is the networking our kids get to do.  Often I feel that Katelyn (my non-JIA kiddo) gets lost in the shuffle of all this (there will be a future blog on sibling dynamics), so finding her space at the JAC each time is so very important.  And who can forget the PANDAS??  My kids absolutely adore their growing collection of pandas from the wonderful AOII.  Thank you!

We are on the every-other year plan for JAC, so my kids are already bummed that we aren’t planning at trip to Houston or Milwaukee next year.  Who knows, maybe we’ll surprise them?  😉  Feel free to comment on this post with your most memorable parts of this year’s conferences.  I saw lots of great posts about Seattle, so I’d love to hear from you guys as well!!  IMG_1589

 

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