Spondylitis.org @spondylitis
A Nonprofit Organization dedicated to the quest to cure ankylosing spondylitis & related diseases, and empowering all affected to live life to the fullest. spondylitis.org Encino, CA Joined January 2009-
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That's it for Day 1 of the Global Spondyloarthritis Summit. Thanks for joining us today. See you back here tomorrow at 8 am PDT for Day 2. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
We're about 30 minutes away from our final presentation of Day 1, Precision Medicine: The Potential of Tailored Treatments for SpA, with Christopher T. Ritchlin, MD, MPH. Join us in the Auditorium at 2:45 pm PDT spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
Self-Advocacy: At Your Doctor's Appointment Has this happened to you? You finally get a doctor’s appointment and completely forget the questions you wanted to ask or feel unprepared. We've got you covered! bit.ly/Self-Advocacy-… #spondylitis
Let's talk about it at 1:15pm PDT. SAA Support Group Leaders Carolyn Begeman and Gail Wright will lead a live discussion about being mindful of our energy reserves and recognizing the need for rest and self-care spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
Lunch is almost over. Head over to the Auditorium to join us at 12pm PDT for Minimizing Fatigue and Strain, Conserving Energy, and Hacks for Daily Living Activities, presented by Cheryl Crow, OTR/L. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain #fatigue
May is SpA Awareness Month! To celebrate, visit the SAA Advocacy Booth May 3-4 during SAA’s Global SpA Summit! We’d LOVE to see YOU! Then check out these EIGHT Ways to Spread SpA Awareness: bit.ly/SpA-Awareness-… #spondysummit #spondylitis
If you could go back in time, what would you tell your newly diagnosed self about living with SpA? Join the conversation at our Breakout discussion at 10:15 am PDT. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
Fantastic presentation on Treatment and Research Advances in Spondyloarthritis. Join us online now for the Live Q & A with Dr. Liron Caplan. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
It's 8:30 am PDT. Let's start off Day 1 of the Global SpA Summit with a morning stretch. Head over to the Auditorium in the navigation menu to join Alex Levine for his Morning Exercise Session: Art of Stretching. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
Good morning. Virtual doors open for our 6th Annual Global Spondyloarthritis Summit at 8 am PDT! Explore the platform, network with others attending virtually, and visit the exhibit hall. Will we see you there? spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
Worried about bone fragility? Dr. Lane discusses the increased risk of osteoporosis in people living with SpA & shares tips on prevention, early intervention, & management strategies Info: spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #Osteoporosis #bonefragility
Timing is running out. Less than 24 hours to go until our 6th Annual Global Spondyloarthritis Summit, May 3-4, 2024. Register now. Virtual doors open tomorrow at 8am PDT. Learn more: spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain
There have been NO increases in health insurance premiums in any state that has passed #ShareTheSavings legislation. @BarrowRegina @Sen_Henry09 @TalbotforLA #lalege, please pass #SB347 to lower Rx costs. Thank you @jimmy4nola for sponsoring. lailluminator.com/2024/04/29/pat…
Insurers claim copay accumulators keep premiums low – so why does data show accumulator bans have no impact on state premiums? These schemes raise costs for patients trying to access treatment. Please support AB 2180! #AllCopaysCountCA bit.ly/3QsgXTY @AsmKateSanchez
88% of adults want policymakers to lower out-of-pocket healthcare costs. @BarrowRegina @Sen_Henry09 @TalbotforLA #lalege, please pass #SB347 to #ShareTheSavings. @jimmy4nola, thank you for sponsoring this patient-first legislation! #spondylitis lailluminator.com/2024/04/29/pat…
Did you know? @AIDSadvocacy compared the average premiums of states with and without copay accumulator bans and found NO EVIDENCE that enacting such legislation impacts premiums. It’s time to pass AB 2180 to ensure #AllCopaysCountCA. bit.ly/3QsgXTY@BuffyW… #spondyltis
Insurers claim that protecting the value of copay assistance would raise premiums – but @GHLForg data shows this is untrue. AB 2180 would ensure that patients living with chronic illnesses can access needed treatments. #AllCopaysCountCA bit.ly/44mEKdC @AsmKateSanchez
Guess what day it is? We've dropped a new episode with Jill Miller & @globetrotteri, a SpA advocate & award-winning blogger of myseveralworlds.com who discusses her journey spondylitis.org/podcasts #spondylitis #spondycast #advocate #axspa #spondyloarthritisawarenessmonth
Join us at the 6th Annual Global Spondyloarthritis Summit on May 4 for Resilience in the Face of Chronic Illness: Focus on Mental and Emotional Health, presented by Meghan Wilde, PsyD. Learn more: spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain #mentalhealth
Big win for Californians! AB 2180 unanimously passed through the Assembly Health Committee – this is a key milestone on the journey toward better patient access and adherence to treatment and improving health equity in CA. #AllCopaysCountCA bit.ly/3w6Oufs #spondylitis
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Guess what day it is? We've dropped a new episode with Jill Miller & @globetrotteri, a SpA advocate & award-winning blogger of myseveralworlds.com who discusses her journey spondylitis.org/podcasts #spondylitis #spondycast #advocate #axspa #spondyloarthritisawarenessmonth
Guess what day it is? We've dropped a new episode with Jill Miller & @globetrotteri, a SpA advocate & award-winning blogger of myseveralworlds.com who discusses her journey spondylitis.org/podcasts #spondylitis #spondycast #advocate #axspa #spondyloarthritisawarenessmonth
Check out our new episode with @JVisscher_207, Founder of the annual Walk Your AS Off virtual walk spondylitis.org/podcasts #spondylitis #spondycast #WYASO #advocate
It's May 1st! We are walking to raise awareness for #AxialSpondyloarthritis this month with @walkasone_org! The 6th Annual Global Spondyloarthritis Summit is this weekend on May 3-4. It's FREE to attend the #SpondySummit! Register here: spondyloarthritissummit2024.vfairs.com @spondylitis
Big win for Californians! AB 2180 unanimously passed through the Assembly Health Committee – this is a key milestone on the journey toward better patient access and adherence to treatment and improving health equity in CA. #AllCopaysCountCA bit.ly/3w6Oufs #spondylitis
My mom has been here helping/visiting for the past month while I got set up w. my new power wheelchair. We had a nice dinner on Friday night. We also had mojitos - an old tradition that doesn't happen often. I quit booze years ago! (The last two were in 2012 Bali & 2015 Arizona.)
Register now for the Global Spondyloarthritis Summit, May 3 - 4, to hear Dr. Denis Poddubnyy discuss how AI can open new possibilities for enhanced care and improved patient outcomes for people with SpA. spondyloarthritissummit2024.vfairs.com #spondysummit #spondylitis #axspa #backpain #ai
@spondylitis Hurray for @realcc. Can't wait to see Cheryl's presentation and cheer her on!
I went further in my power #wheelchair than I have in years. We had a nice dinner out and it was a pretty smooth ride! First time I've gone that far at normal walking speed in the over a decade. My chair is a robot and it talks to me. Auto controlled from my phone too.
“Just like a quarterback needs protection from the offensive line to complete a successful pass, #spondylitis patients need protection from unnecessary hurdles in accessing the medications they need. Urge Congress to include #SafeStepAct in PBM Reform!” bit.ly/SafeStepActNow
NYPD police officers rescued a two-year-old girl from a burning car in 1996. They never imagined that she would grow up to be a Police Officer.
In 1996 when then Police Officers Eric Ocasio & Charles Claudio rescued a two-year-old girl from a burning car they never imagined that she would grow up to be a Police Officer, inspired by their actions. Watch below and see the full video on our YouTube page ⬇️
Over 100 patient and provider organizations are asking Congress to include the #SafeStepAct in any PBM reform package to help patients directly. @SenSchumer @LeaderMcConnell @SpeakerJohnson @RepJeffries @EdWorkforceCmte @HELPCmteDems Read our letter here🔗bit.ly/3FRC4Jr
The way this crow understands water displacement
"It's called 'REsearch', not 'search', because most of the time you don't get it perfect on the first try." The kind words of Reza Jafarzadeh @srjafarz on my research challenges. Get colleagues like this, folks!
Connecting briefly at the meeting or for longer periods at dinner Seeing mentees doing well Letting mentors know I’m doing well Starting another trend! #ACR23
What was your favorite thing about #ACR23? Mine..The #PosterHall - Best place to caffeinate, refuel, exchange bracelets, learn Great Science and make good memories!! So glad to finally meet @SattuiSEMD @cappelliMD @ImmuneRheum @KaymakciMd !! @ACRheum
It was a pleasure connecting with our advocacy partners @LADAOrg & @KathleenArntsen at @acr23. Thank you for your partnership and support, @Lupus_Chat, @LupusNE, @LupusIL, @C_O_L_N, & @IAFaccess. We are grateful to collaborate with you on patient perspectives in #rheumatology.