TARS Awareness New York

03/11/2026

03/11/2026

🌍 LOOK AT WHAT THIS COMMUNITY BUILT.

The Global TARS Network 💙🌎

When we first started connecting families living with TAR Syndrome, many people told us the same thing:

"I've never met another person with TAR."

So we started building something simple — a map.

Today that map shows something incredible.

📍 120 individuals living with TAR Syndrome
🌎 17 countries represented
💙 One growing global community

Each pin represents a life.
A family.
A story of strength.

Together, this community is showing the world something powerful:

Rare — but never alone.

And this is only the beginning.

To every TAR warrior and family who has trusted us with your story — thank you for helping build a community where no one has to feel alone.

🌍 ARE YOU ON THIS MAP?

Our Global TARS Map is growing, and we know there are many more families around the world who have not yet found this community.

If you or someone you love is living with TAR Syndrome, we would love to add you.

📍 Help us grow the Global TARS Network.

Every new pin reminds families everywhere of something important:

You are not alone.

💙 Rare But Strong

02/16/2026

Presidents’ Day is a reminder that progress happens when voices are heard. TAR Syndrome Awareness New York continues to advocate for inclusion, understanding, and equal opportunity for individuals living with rare conditions and disabilities.
Every voice matters. Every person matters.


Photo Credit: Coleman

02/02/2026

February is National Black History Month—a time to honor those who fought for justice and to continue demanding equity, accessibility, and opportunity for all. Progress requires action. Awareness must lead to change.


Photo Credit to: New York State Assembly Majority

01/19/2026

At TARS Awareness New York, we honor Dr. Martin Luther King Jr.’s legacy by reaffirming that civil rights include disability rights. Justice, dignity, and equal opportunity must extend to everyone—without exception.

“Injustice anywhere is a threat to justice everywhere.” - DR. MLK JR.

Today, we continue the work of building a more inclusive and accessible society.

— TARS Awareness New York

01/01/2026

Happy New Year from TARS Awareness New York

Thank you for supporting TAR Syndrome awareness and inclusion.

As we enter the new year, we remain committed to advocacy, visibility, and community support across New York and beyond.

Wishing you health, strength, and progress in the year ahead. 🎆🎉

12/25/2025

Merry Christmas from TAR Syndrome Awareness New York
Sending love to everyone living with TAR Syndrome, their families, and supporters. This season is a reminder that accessibility, dignity, and inclusion matter — during the holidays and every day. Thank you for standing with us. 🎄💙

11/27/2025

🍁🧡 Happy Thanksgiving from TARS Awareness New York! 🧡🍁

Today we pause with gratitude — for community, for resilience, and for every individual and family effected by TAR Syndrome.
TAR Awareness New York is thankful for everyone who supports disability advocacy, accessibility, and the ongoing mission to uplift and empower those living with Thrombocytopenia-Absent Radius (TAR) Syndrome.

May your day be filled with warmth, comfort, kindness, and connection.
Happy Thanksgiving from our community to yours! 🦃✨

11/14/2025

Friday Fun Fact:
Why Awareness Matters for Emergencies

For those living with TAR Syndrome
(Thrombocytopenia with Absent Radius),
platelet counts can sometimes drop suddenly and severely.

Platelets are the body’s natural “clot builders,” helping stop bleeding when we get a cut or bruise. But when platelet levels fall too low — especially below 50,000/μL — even small injuries or nosebleeds can become serious.
When levels drop under 10,000/μL, spontaneous internal bleeding can occur, which is why awareness is truly lifesaving.

📚 Medical research shows:

Infants with TAR are at the highest risk for bleeding complications during their first year of life. (Hall et al., Am J Med Genet, 1982)
Platelet levels can fluctuate without warning, even during simple illnesses. (Orphanet J Rare Dis, 2007)
Fevers, teething, or infections can trigger sudden drops.
(MedlinePlus Genetics, NIH)
That’s why awareness matters — not just in hospitals, but everywhere.
When teachers, caregivers, and emergency responders understand TAR, they can react quickly and handle situations with the care and gentleness that save lives.

Awareness isn’t just education — it’s protection.

11/02/2025

Fun Fact Friday

RBM8A isn’t just “a gene” — it’s part of something much bigger!
When RBM8A doesn’t work properly, it disrupts these RNA processes in certain cells, like those that make platelets and shape developing limbs — leading to the unique features of TAR syndrome.
It helps form the exon-junction complex, which controls how our cells process RNA — including splicing, export, and quality checks (called “nonsense-mediated decay”).
Source: NCBI Research on RBM8A & the Exon-Junction Complex

10/17/2025

Friday Fun Fact

People with TAR Syndrome do get the message to make more platelets — their bodies just can’t answer it properly.

🩸 The hormone that tells bone marrow to make platelets (called thrombopoietin) is working fine, but the bone marrow doesn’t respond the way it should.
That’s why people with TAR have low platelet counts, even though the body is sending out strong “make more!” signals.🩸

It’s like having good cell service — but your phone’s speaker is broken.

Source: Medscape & PubMed (PMID: 32227665)