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Sydney Stern

@sydstern

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Scientist with a Cause🐶👩🏻‍🔬#PVNS #TGCT 💪🏻 It’s Dr to you 👩🏻‍🎓 learn more & donate to PVNS/TGCT nonprofit at 👇🏻

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Having #TGCT changed my life, to say the very least. If you haven’t seen the short documentary on my experience, check it out and learn more at TGCTSupport.org

#PVNS #tumor #tgctstrong by @sydstern

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3 months ago

I’m excited to finally share something very personal.
I was recently part of a mini-documentary about my journey living with tenosynovial giant cell tumor (#TGCT/#PVNS), a rare tumor disease that has shaped so much of my life. The video follows my experience as a patient, my educational journey, and how those experiences ultimately led to creating @tgctsupport (a program of @liferaftgroup) to help others facing the same challenges. My life’s greatest obstacles became my greatest purpose. For that, I’m forever grateful.

I hope you’ll take a few minutes to watch and share.
🎥 🔗 in bio!

Thank you to UICC and Deciphera for bringing my story to life and to everyone who has supported me along the way. ❤️ 🦓 special shoutout to my husband, Zach, who supports every role I put my mind to. You a GOAT.

#tgctstrong #tumor #tgctwarrior by @sydstern

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4 months ago

By 2-passenger vehicle, they actually mean 2 passengers plus my sidekick 🐶😂 The things this dog puts up with, the places she lets me take her, and the adventures we get to share 🥹🥰🐾 by @sydstern

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4 days ago

Forever wedding date, forever covered in dog fur with you. 🤍🐾 by @sydstern

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5 days ago

Did someone say #TGCT? 🦓👀 #TGCTStrong #rarediseases by @sydstern

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8 days ago

We presented at the CDC’s ICD-10-CM meeting on September 16, and we need your help to support our proposal. TGCT deserves a single unifying code that reflects its biology. The current codes are outdated and classify “PVNS” as a muskuloskeletal or inflammatory condition. Not as a tumor disease. This does not align with current clinical practice or the needs of our community. Learn more at TGCTSupport.org/news @the_sarcoma_doc @alysia_kemp_md @ctosociety by @sydstern

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14 days ago

An eventful week ✨ Speaking at 3 different events, across 3 days and 2 countries! ☺️🌍 Grateful for the opportunities to represent my community, talk about important issues in #TGCT and Oligonucleotide drug development, and meet amazing people along the way. 💫 by @sydstern

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20 days ago

A quick trip to Austria to present… but, I got so much more than I came for 🇦🇹✨

A little science, a lot of community, culture, food, and the joy of ending the trip by seeing an amazing new friend. ❤️ @__ivanana

Until next time, Austria! ✈️ taken in Vienna, Austria by @sydstern

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20 days ago

Not me at an orthopedic conference begging for someone to ask me about #TGCT! taken in Vienna, Austria by @sydstern

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21 days ago

You’ll never believe what I saw today ✈️🙈👀

Did you know that TGCT affects an estimated 56 people per 100,000? And that it takes most patients years to be properly diagnosed?

While TGCT can affect everyone differently, it can be a debilitating, chronic tumor disease that has a lasting impact on patients’ lives.

Rare or “benign” don’t mean insignificant.

Learn more about TGCT and the patient community at TGCTSupport.org and @tgctsupport 🦓

#TGCTStrong #RareDisease #PVNS #tumor by @sydstern

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a month ago

🌊 Today, we made a small wave in the direction of positive change.

On September 16, 2026, Sydney Stern, PhD, and Alysia Kemp, MD, presented a proposal to the ICD-10-CM Coordination & Maintenance Committee to update how tenosynovial giant cell tumor (#TGCT) is coded and classified.

The proposal would create a unifying TGCT diagnostic code in the Neoplasm chapter, aligning ICD-10-CM coding with the known biology and contemporary classification of the disease.

It would also add a note under the historical term pigmented villonodular synovitis (#PVNS), making the disease no longer incorrectly classified as a primary inflammatory condition or in the musculoskeletal chapter.

This has been a patient advocacy–initiated effort, bringing together patients, clinicians, researchers, and other stakeholders, with support from the Connective Tissue Oncology Society (@ctosociety), Musculoskeletal Tumor Society (@msts_ortho), and leading TGCT specialists like Drs @alysia_kemp_md (@the_sarcoma_doc), Gabriel Tinoco, Nicholas Bernthal, and Matthew DiCaprio.

🌊 We are proud of this moment but this is just the beginning.

Now, we need your voice. Patients. Clinicians. Researchers. Payers. We need you.

We’ll soon share instructions for how you can support the proposal and make your voice heard to the CDC.

Stay tuned. Together, we can help ensure TGCT is accurately recognized.
#TGCTStrong by @sydstern

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a month ago

Just 1 month to go until we present our work at the International Society of Limb Salvage (#ISOLS) Annual Conference! 🦴✨

We’ll be sharing findings on the impact of joint replacement on patient-reported outcomes (#PROs) in #TGCT, an important area as we continue to better understand long-term outcomes for patients.

Excited to share this work with the orthopedic oncology community in Vienna! 🇦🇹 by @sydstern

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2 months ago