Liza-Marie (Liza) Johnson

Pediatric bioethicist, heme/onc doc, researcher, and foodie. Tweets and ideas are my own.

[Liza-Marie (Liza) Johnson @lijohnson2000]

Working with @AkshaySharmaMD to bring together experts and #sicklecelldisease patient stakeholders. #scdgene seeks to inform clinical trial communication around novel clinical trials, such as #geneediting. @ELSIhub for the funding #elsi #genomics #SCDAwareness . @StJudeResearch

[Liza-Marie (Liza) Johnson @lijohnson2000]

Have a $$$ @MySamsonite bag that broke before first use. Had to fly with it because store closed & could not return. @SamsoniteUSA was helping but has now #ghosted me when I replied to their email with my replacement choice. Terrible customer service, just buy @tumitravel

[Liza-Marie (Liza) Johnson @lijohnson2000]

@flymemphis Where can we see parking lot status (full or open etc)?

[St. Jude Research @StJudeResearch]

Few #SickleCell disease patients feel knowledgeable about #GeneTherapy, and most feel neutral about its safety. Culturally appropriate patient-centered education is urgently needed as #GeneTx proceeds to the clinic. https://t.co/KVUdgN4hY8 @AkshaySharmaMD @lijohnson2000 @janbra1

[Liza-Marie (Liza) Johnson @lijohnson2000]

Bi-directional communication with patients involves understanding their "why". New paper on attitudes towards #Covid19 vaccine among pediatric families with #SCD. #sicklecell #bioethics #patientvoice #askthem https://t.co/bapOvClevm

[Liza-Marie (Liza) Johnson @lijohnson2000]

Palliative Sedation Therapy (PST) a tool for symptom management in children with refractory suffering at the end of life. Updates to our PST algorithm and clinical practice led by colleague Dr. Andrea Cuviello. https://t.co/DX1ktIo5Vo #mdpichildren via @MDPIOpenAccess

[Liza-Marie (Liza) Johnson @lijohnson2000]

Thinking a lot about personalized N-of-few Investigational Plans lately. How can we honor principles of #researchethics to gain knowledge and honor our duty to protect patients who are participants in investigational interventions.

[St. Jude Research @StJudeResearch]

After an experimental epilepsy drug caused acute side effects in 2 non-St. Jude patients, physician-ethicist @lijohnson2000 says researchers need to share data so other clinicians can make future treatment safer. https://t.co/FQAkECACoC @Erika_Check @NYTimes

[Liza-Marie (Liza) Johnson @lijohnson2000]

Always a privilege to speak at national meetings! @AmerSocBioHum annual meeting, today on the Ethical implications of N-of-Few interventions. Fantastic co-panelists and great Q&A with the audience!

[Jennifer E. Miller @millerbioethics]

#asbh22 great panel w @ABatemanHouse @john_massarelli #rafaelescondon #LizaMarieJohnson individualized antisense oligonucleotides for n-of-few genetic conditions: ethical challenges

[Liza-Marie (Liza) Johnson @lijohnson2000]

#informedconsent should be more a thick stack of papers & #medicaljargon. What about multimodal approaches? #researchethics #decisionmaking. Thanks Pediatric Blood and Cancer to let me opine! https://t.co/3GDwo1nwtm How do you think outside the box to facilitate quality consent?

[Liza-Marie (Liza) Johnson @lijohnson2000]

Thank you to the @NHLBI for funding #PedsGeneRx. Partnering with families of kids with #sicklecelldisease and other #pediatric #raredisease to develop patient-centered #genethreapy education & #clinicaltrials. DM me for more information about upcoming focus groups. #ethics

[Liza-Marie (Liza) Johnson @lijohnson2000]

Looking for a nocturnist (or hybrid) to join our team. Open to physicians who are BE/BC in peds, med-peds, or peds EM. @StJudeResearch https://t.co/JNq5CmGgas
#thisishowwehospitalist #stjudehospitalistprogram

[Akshay Sharma MD @AkshaySharmaMD]

Thanks to @ELSIhub for highlighting our work on why #SickleCell stakeholders' voices are so important in the conversation about novel #GeneTherapies, thanks to @bioethicsjosie for mentoring @lijohnson2000 and me https://t.co/n2JNZGwyE7

[Liza-Marie (Liza) Johnson @lijohnson2000]

@jessjenk @VanessaGregson @jessjenk, very sorry this happened to you. So grateful your injuries weren’t more serious! Heal quickly. ❤️‍🩹

[Liza-Marie (Liza) Johnson @lijohnson2000]

💯!! Also, we need to #trust our patients. You can be on one of these Rx and still have pain crisis. #sicklecell

[Pat McGann, MD @PTMcGann]

Pain medications are certainly an important part of #SickleCell care but it is essential that ALL patients also receive at least one disease modifying 💊 to prevent other inevitable complications

We have a growing # of options Hydroxyurea, Oxbryta, Adakveo, transfusions

[Liza-Marie (Liza) Johnson @lijohnson2000]

Official guidance from Association of Bioethics Program Directors on obligations in the post Dobbs era. Read it here: https://t.co/2RBsj9FMgm #AbortionIsHealthcare

[Liza-Marie (Liza) Johnson @lijohnson2000]

1/ Tip, always take a photo of the valet tag #. I actually joked with the guy as I took the 📸,”it’s not like you’re going to lose this, but just in case” 🫣

[Liza-Marie (Liza) Johnson @lijohnson2000]

Landed in #DEN where 20+ co-passengers discovered that @united crew @flymemphis FORGOT to load all the gate checked bags onto the ✈️. I mean that guy scanning the valet bag tags & the guy on the ground waiting had #onejob. Huge inconvenience, #travelnightmares. 🤬😤

[Akshay Sharma MD @AkshaySharmaMD]

Had an amazing 2 days brainstorming with #SickleCell warriors & caregivers.
We are developing educational content for SCD #GeneTherapy & #BMTsm for patients & providers w/ @BoosterShotCmx. Thanks to @ELSIhub + @CRISPRTX for funding, @lijohnson2000 for co-leading this effort 🙏🏽

[Liza-Marie (Liza) Johnson @lijohnson2000]

Great 2 days with #SCDWarriors brainstorming content for our tool on gene therapy and BMT for #scd. Thanks to the whole team, but especially @ELSIhub for funding part of this collaboration and @AkshaySharmaMD for co-leading these past 2 years! @StJudeResearch

[Eden Robertson, PhD @Eden_Robertson]

The #scdgene study group chatting w/ @BoosterShotCmx abt how to approach the patient/caregiver info resource on gene therapy vs BMT, following the productive focus group discussions. Co-develop is truly in progress here in #chicago! @StJudeResearch