My favorite thing to do is to resist and change some stupid policy or practice that is done because “we just have always done it that way”

We are so incredibly lucky to have Melissa Creary, PhD, MPH share her wisdom with our team as we aim to continually improve the culture related to sickle cell disease here focused on optimizing the lives and care of our patients

Advocacy isn’t something I ever learned in an of my training but it turns out standing on that soap box DOES make a difference

So much inequity for our #SickleCell warriors Livestrong have you had the opportunity to learn about sickle cell disease? Many of us would be happy to have a conversation which I think would open your eyes to the impact you can have for this too often ignored group of patients

Amazing workshop and great session. But sheesh these guys are more ruthless than actual hospital C-suite people!

I never thought I’d be so proud to be part of something so DANC Look forward to this paradigm shifting work to provide evidence that will further eliminate race-based medicine

I am all for safety and definitely don’t want to get tuberculosis but is ANNUAL Fit testing really necessary? Does the shape of people’s faces change on an annual basis?

I am not one to share things but the rock of our #SickleCell team- Angelica, our Patient Coordinator, suddenly lost her husband to sickle cell disease last week Please share this and considering donating as able to support Angelica and her family ♥️ gofund.me/90742902

Pat McGann, MD “We may look ok on the outside but we all have a story” the amazing Rhode Island warriors sharing their truth.

Amazing day at the Rhode Island State House today to advocate for #SickleCellDisease Proud to #ShineTheLightonSickleCell2024

Busy week raising awareness and building community with our local and regional #SickleCell community Looks like a beautiful day tomorrow for our New England Sickle Cell Consortium educational symposium about gene therapy and the fun-filled Sickle Cell-ebration to follow! ☀️

Thanks to those that shared the post for the gene therapy survey but the internet being the internet, we got >3000 responses of spammers who wanted a gift card so had to shut it down. Apologies if anyone actually filled it out. If so, reach out and I’ll send the new link!

Psssh come on ASH you can’t send these “deadline approaching” emails until next week. We could run a whole clinical trial and submit data by next Thursday at midnight PACIFIC TIME! 😜 #ASH24

Today is the 1st day of #SickleCellAwarenessMonth So many awareness angles but let’s not forget that this is arguably the most neglected #GlobalHealth problem A baby with SCD is born every MINUTE Awareness is good but we need so much action. Who’s here for it?

Shout it from the rooftops. We need so much more than awareness. We need action we need change and we needed it yesterday So lucky to have Sharl Azar, MD as a friend and colleague in these fights that we’ll continue to fight in the coming year, years and our entire careers.

#SickleCellAwarenessMonth D2 We are lucky now to have a healthier SCD generation. Family planning is increasingly important Sadly we have little research on how to manage SCD during pregnancy and 0 approved medications We must address this gap through patient-engaged research

#SickleCellAwarenessMonth D3 Let’s celebrate where we are now Children w/SCD born in this generation now have access to early diagnosis by newborn screening and begin hydroxyurea early in life (6-9 months) Kids now can and are living normal lives without restrictions!

#SickleCellAwarenessMonth D5 - Hydroxyurea Appreciation I KNOW it’s not perfect for everyone, esp. if started as an adult, but when used at the right dose and taken every day, it is AMAZING and transforms lives Don’t be afraid. It works. I promise. HbF% rivaling gene therapy