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May 2019

MAY E-NEWSLETTER | Prevent Blood Clots During NWHW

Join the National Blood Clot Alliance (NBCA) during National Women’s Health Week (NWHW), May …

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National Blood Clot Alliance (NBCA) Announces Key Medical Leadership Updates to Advance Global Mission Against Venous Thromboembolism

NBCA Announces Key Medical Leadership Updates to Advance Global Mission Against Venous Thromboembolism The National Blood Clot Alliance (NBCA) today…

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If You’re Living with Antiphospholipid Syndrome (APS), Take Our Survey

Antiphospholipid syndrome (APS) is a complex and often misunderstood autoimmune condition. If you have been diagnosed with APS, we invite…

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Advancing blood clot awareness, prevention, diagnosis & treatments to #stoptheclot. Submit your story @ link below ⬇️ Our podcast: Taking a Breath 🎙️

🎙️ New Episode Alert! 🎙️Season 3, Episod

🎙️ New Episode Alert! 🎙️Season 3, Episode 2 of Taking a Breath: A Stop the Clot podcast is now available on all major podcast platforms.

In this episode, listeners hear from Elizabeth Simms, who experienced a saddle pulmonary embolism while pregnant and underwent a computer-assisted vacuum thrombectomy (CAVT). This procedure saved her life and the life of her unborn son.

We also discuss groundbreaking results from a recent PE clinical trial, the future of clot removal, and other game-changing technologies with Dr. Venkat Tummala, vascular and interventional radiologist and associate chief medical officer at Penumbra.

Thank you, Elizabeth, for sharing your story and helping raise awareness. We’re also grateful for Dr. Tummala’s valuable insights.

Listen on our website or wherever you get your podcasts: Link in bio!

#StopTheClot #TakingABreath #StopTheClotPodcast #BloodClotPodcast

🌻 In loving memory of Kelley Syron 🌻 On a s

🌻 In loving memory of Kelley Syron 🌻

On a sunny morning in Palm City, FL, friends and family came together for the annual walk honoring Kelley Syron — a vibrant, compassionate young woman whose life was tragically cut short at age 34 by a pulmonary embolism following a routine surgery.

Kelley dedicated her career to helping children and families through her work at The Children’s Therapy Center, where she was known for her kindness, empathy, and unwavering commitment to others. Her legacy of care and compassion continues to inspire everyone who knew her.

This year’s walk, organized by her mother Suzan Syron-Singh, brought together twice as many participants as last year and raised more than $6,100 for the National Blood Clot Alliance! Participants wore yellow shirts with sunflowers — Kelley’s signature flower — symbolizing her warmth, optimism, and the light she continues to bring to others.

In Florida, where Kelley’s family and friends continue to honor her memory, the passage of the Emily Adkins Family Protection Act this summer represents hope and progress.

Like Kelley, Emily died of a preventable blood clot after a routine procedure. This landmark law will help hospitals and clinicians better identify, prevent, and report dangerous blood clots so more families don’t have to experience the same loss.

Thank you to Suzan and everyone who helped make this beautiful event possible, celebrating Kelley’s memory and helping raise awareness about life-threatening blood clots. 💛

If you’d like to organize your own blood clot awareness event, we can help! More info at the link in bio.

#StopTheClot #MemorialWalk #BloodClotAwareness #PulmonaryEmbolism

As #TeamStopTheClot gets ready for the @nycmaratho

As #TeamStopTheClot gets ready for the @nycmarathon on Sunday, we’re revisiting one of our most powerful stories from Taking a Breath: A Stop the Clot Podcast.

Professional distance runner and ultramarathoner @sagecanaday — who coached this year’s marathon team — faced an unexpected challenge in 2021 when what seemed like back pain and shortness of breath turned out to be a pulmonary embolism.

Sage’s story is a reminder that blood clots can happen to anyone, even elite athletes. Thank you, Sage, for sharing your journey, lending your expertise to our runners, and helping others recognize the signs.

🎧 Listen to Sage’s episode here or wherever you get your podcasts: Link in bio.

#StopTheClot #BloodClots #PE #PulmonaryEmbolism #TakingABreath #SageCanaday ##TeamStopTheClot #NYRR #TCSNYCMarathon #RunForLife #BloodClotAwareness @nyrr @higherrunning

🏅The countdown is on! In five days, Team Stop t

🏅The countdown is on! In five days, Team Stop the Clot will take on the @nycmarathon and Patrick Firth of Rockaway Park, NY is ready to run for a cause close to his heart.

🩸 Patrick is just $1,360 away from reaching his $5,000 goal!

He explains why he’s running 26.2 miles for blood clot awareness:

“In 2018, I experienced an unprovoked bilateral pulmonary embolism. After years of recovery and treatment, I’ve rededicated myself to running and fitness, and I’m proud to run the New York Marathon in support of this cause.”

👏 Help Patrick go the distance in his marathon and his fundraising! Cheer him on or donate at the link in bio!

#TeamStopTheClot #StopTheClot #NBCA #NYRR #TCSNYCMarathon #RunForLife #BloodClotAwareness

🤔 Wondering if you should get tested for thromb

🤔 Wondering if you should get tested for thrombophilia while on a blood thinner? You’re not alone, and the answers are not always straightforward.

Join us for our November PEP Talk on Thrombophilia Testing While on Blood Thinners on Tuesday, Nov. 11 at 7 p.m. ET. Our medical expert for this session is Dr. Dana Angelini of the @ClevelandClinic.

Dr. Angelini is a hematologist who specializes in clotting and bleeding disorders, and she serves as co-chair of NBCA’s Council of Emerging Researchers in Thrombosis (CERT). She’ll explain how anticoagulation can affect test results, when testing is appropriate, and what the findings might mean for your long-term care.

Whether you’re currently on blood thinners or have been advised to test for an inherited clotting condition, this session will help you make sense of the process and talk confidently with your care team.

📧 If you can’t make the live session, register anyway to get the recording sent to your inbox.

🔗 Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots

🏃‍♀️ Race day is almost here! The @nycmar

🏃‍♀️ Race day is almost here! The @nycmarathon takes place Sunday, November 2, and we couldn’t be prouder of the dedicated team of runners who will be pounding the pavement to support the National Blood Clot Alliance.

One of those runners is Aynslee Roberts of Idaho, who shared her story on @KTVB7 in Boise. She was training for her first marathon in 2023 when she was diagnosed with a pulmonary embolism triggered by hormonal contraception. As she recovered, she continued running.

As she prepares to run the biggest marathon in the world in less than two weeks, she’s keeping her “why” in mind — spreading awareness about blood clots.

“By sharing my story, I want to empower others to make well-informed choices about their health and well-being,” she said.

Aynslee, we’re so proud of you and we’re honored to have you on Team Stop the Clot.

Join us in wishing her—and the entire team—a fantastic race!

#StopTheClot #BloodClots #NYCMarathon #PulmonaryEmbolismSurvivor

🏅Countdown to race day! In less than a week, Te

🏅Countdown to race day! In less than a week, Team Stop the Clot will hit the streets for 2025 TCS New York City Marathon — and Kevin Bramble of Belmont, MI is training hard and fundraising for a cause that hits close to home.

🩸 Kevin is just $1,590 away from his $5,000 goal! Here’s why he’s running:

“I‘ve run 30 marathons — including 21 Boston Marathons — but I’ll never forget the one I ran with a blood clot in my leg. I didn’t know at the time that the pain in my calf was actually a sign of deep vein thrombosis.”

👏 Let’s help Kevin cross the finish line — both on the course and in his fundraising! Leave an encouraging comment or donate to his fundraising page: Link in bio.

#TeamStopTheClot #StopTheClot #NBCA #NYRR #TCSNYCMarathon #RunForLife #BloodClotAwareness

Team Stop the Clot congratulates NBCA Coach @SageC

Team Stop the Clot congratulates NBCA Coach @SageCanaday! 🎉

What a finish! Sage crushed the @JavelinaJundred and now heads to New York City as coach of the NBCA Team Stop the Clot Marathon Team! 🗽💪

We’re so proud to have Sage leading our runners as they take on the TCS New York City Marathon, spreading awareness and raising funds to prevent blood clots and save lives. ❤️🩸

Huge thanks to our partners and friends at @hoka, @nyrr, and @nycmarathon for helping make this incredible journey possible.

Let’s do this, Team Stop the Clot! 🙌

#TeamStopTheClot #StopTheClot #NBCA #HOKA #NYRR #NYMarathon #TCSNYCMarathon #RunForLife #BloodClotAwareness

“My dad had suffered from multiple health disord

“My dad had suffered from multiple health disorders, including A-fib, asthma, high blood pressure, high cholesterol, and chronic cellulitis in both legs. I had been visiting him because he needed a lot of assistance.

One day in February 2024, I couldn’t reach him. I went over to his apartment to see what was wrong and he would not answer the door. So, my husband and I called for a wellness check. Once they were able to get through the door, he was gone and my life was forever changed. He was my rock, and someone I cared most about in life.

My dad was an avid Chicago White Sox fan. He was a man of God, loved playing cards, pool, bowling, and volunteering his time to helping others. Anything competitive got him going. He was a strong-willed, but loving man. He was never shy to share his opinions and definitely was not afraid to tell you when you were wrong.

He had an unique sense of humor, not matched by anyone I have ever met in my entire life. He loved to make others smile and laugh. No words can truly express how much he meant to me and nothing can replace the void that was left in his absence.

Take your health seriously, watch out for your family, and most importantly, enjoy every moment you can with your loved ones. You never know when it might be the last time you see them.”

More stories: Link in bio.

#StopTheClot #PulmonaryEmbolism #BloodClotFatality

❤️ A blood clot diagnosis can be devastating,

❤️ A blood clot diagnosis can be devastating, and many patients struggle to move forward.

That’s why we created our New Patient Guide, a handbook for people who’ve been newly diagnosed with deep vein thrombosis (DVT), pulmonary embolism (PE), or cerebral venous sinus thrombosis (CVST).

Patients and their caregivers can get answers to common questions and access resources to help navigate life after this diagnosis.

🔗 You are not alone! Download the guide (available in English and Spanish!): Link in bio!

#StopTheClot #BloodClots #NewPatientGuide #PulmonaryEmbolism #DeepVeinThrombosis #CVST

❓ Question: Have you had thrombophilia testing?

❓ Question: Have you had thrombophilia testing?

About one-quarter to one-third of people who have had a blood clot test positive for thrombophilia, most often factor V Leiden or the prothrombin gene mutation.

⚠️ Important: Some tests can be distorted while you’re on blood thinners. Timing matters, so talk with your clinician about when to test and which tests are useful for you.

Why test? The value is case-by-case. Results don’t usually change short-term treatment, but may help guide long-term decisions (pregnancy planning or if your risk of recurrence is high).

🔉 Sound off in the comments about your experience with testing, and register for our November PEP Talk: Thrombophilia Testing While on Blood Thinners on Tuesday, Nov. 11 at 7 p.m. ET.

Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots #VTE

"In 2014, while in podiatry school, I went to the

"In 2014, while in podiatry school, I went to the student health center because I felt short or breath and was coughing up blood. The nurse practitioner diagnosed me with bronchitis.

Less than two weeks later, I learned the truth — I had a saddle pulmonary embolism, which means a large blood clot was blocking blood flow to both sides of my lungs. The clot was caused by birth control pills, along with other risk factors like recent travel and my weight.

I needed emergency treatment, including procedure called a mechanical thrombectomy to remove the clot from my leg and another procedure to dissolve the one in my lungs. I also had part of my lung damaged by the clot, called a pulmonary infarction.

I was on a blood thinner, rivaroxaban, for six months after this incident and I have done well since then. I delivered a healthy baby boy in 2023 and took daily blood thinning injections (enoxaparin) without any issues.

I was recently traveling and developed another blood clot in my leg (DVT). As a result, I will need to take blood thinners for life and I am okay with that. I am grateful to be alive.

As a physician, I am more aware of looking for the signs and symptoms of blood clots in my patients. If someone has symptoms that make me suspect a DVT, I don’t hesitate to order an ultrasound to check for it.

I enjoy looking at NBCA’s Instagram page and knowing I am not alone in this battle. There are a lot of people like me and I feel extremely grateful that I made it out alive.

My advice is to listen to your body. You know your body better than anyone else. If you feel the symptoms and are concerned, get checked out."

More stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #BloodClotAwareness

🏅Countdown to race day! In less than two weeks,

🏅Countdown to race day! In less than two weeks, Team Stop the Clot will hit the streets for 2025 TCS New York City Marathon and their training is in high gear.

We’re introducing you to the inspiring runners who are clocking the miles, sharing their stories, and raising funds for NBCA.

🏃‍♀️ Molly Tilton of New York City shares why she’s running on Team Stop the Clot:

“It is a privilege to be running the NYC Marathon in support of Stop the Clot. This cause is deeply personal for my family. With God’s protection, my dad has survived two pulmonary emboli. I feel so grateful to be able to honor my dad's strength by having these little legs run 26.2 miles!”

Leave an supportive comment or donate: Link in bio!

#stoptheclot #teamstoptheclot #bloodclots #nycmarathon #bloodclotawareness

🏃‍➡️ Calling all runners! Join profession

🏃‍➡️ Calling all runners! Join professional runner and pulmonary embolism survivor @SageCanaday and the National Blood Clot Alliance’s @NYCMarathon team for a fun, easy three-mile shakeout run through Central Park the day before the marathon.

You don’t have to be a registered marathon runner to join — all are welcome! No registration fee, just good vibes and community spirit.

🗓️ Saturday, November 1, 2025
🕙 10 a.m. ET
📍 Start and finish: @HOKA store, 579 5th Ave., New York City
🎁 Goodie bags from HOKA + NBCA and NYC bagels! (Limited to the first 50 people.)

Register now to save your spot: 🔗 in bio!

#StopTheClot #NYCMarathon #ShakeoutRun

Clinical trials are reshaping how doctors treat in

Clinical trials are reshaping how doctors treat intermediate-risk pulmonary embolism (PE).

Dr. Parth Rali, director of the Temple University’s Pulmonary Embolism Response Team (PERT) and NBCA volunteer, highlighted at the recent American College of Chest Physicians (CHEST) 2025 Annual Meeting that several new clinical trials are testing innovative treatment approaches, from lower-dose clot-busting drugs to advanced catheter procedures.

He predicts these trials will triple the number of randomized patients studied and mark a new era for PE treatment.

🔗 Read more: Link in bio.

#StopTheClot #ClinicalTrials #PulmonaryEmbolismTreatment #CHEST2025

Blood clotting disorders, also called thrombophili

Blood clotting disorders, also called thrombophilias, can run in families—and knowing when and how to get tested isn’t always simple, especially if you’re already on blood thinners.

Our November PEP Talk will help you understand what thrombophilia testing involves, why it matters, and how to approach these conversations with your healthcare provider. We’ll also explore how to talk with family members who may share inherited clotting risks.

🩸At the link in bio, check out our helpful resource on shared decision making for blood clotting disorder testing.

🔗Join us Tuesday, Nov. 11 at 7 p.m. ET for this important discussion. Register: Link in bio!

(If you can’t attend the live event, register anyway to get the recording sent to your inbox.)

#StopTheClot #ThrombophiliaTesting #BloodClottingDisorders

❤️ We see you — and others are, too. At the

❤️ We see you — and others are, too.

At the CHEST conference this week, we were moved by Merck’s powerful “Red Chair” exhibit — a reminder that patients belong at the center of every conversation.

Their message says it all:
“Empowering the patient community. When you’re sitting in this red chair, ask yourself — how can I prioritize patient health? How can I empower patients to engage in shared decision-making?”

At NBCA, that’s exactly why we’re here — to make sure your voices are heard, your experiences are represented, and your stories are shaping change.

Your participation in NBCA surveys, patient stories, support groups, and programs helps industry and clinicians better understand what patients really need.

Change is happening — and you’re part of it. 🫶

#CHEST2025 #StopTheClot #PatientVoice #SharedDecisionMaking @merck

Elite athletes aren’t immune to blood clots. Fro

Elite athletes aren’t immune to blood clots. From NBA stars Damian Lillard and Chris Bosh to tennis legend Serena Williams, clots have sidelined players across every sport.

Paralympic wheelchair racing champion @TatyanaMcFaddenUSA was diagnosed with a clot in 2017 and made a remarkable comeback — returning to racing, winning medals, and advocating for blood clot awareness through the National Blood Clot Alliance.

Their stories are a reminder that anyone, even top performers in peak condition, can be at risk. 🔗 Read the piece: Link in bio!

Tatyana McFadden told her story on our podcast. 🔗Listen at the link in bio.

#StopTheClot #AthletesAndBloodClots

🫁 Every breath matters — and NBCA Health Equi

🫁 Every breath matters — and NBCA Health Equity Coordinator, Karen Adams, knows this firsthand. This striking lung art installation at #CHEST2025 provided the perfect backdrop for her journey as a pulmonary embolism survivor and advocate.

After surviving bilateral PEs linked to cancer, Karen now uses her experience to help clinicians and patients recognize symptoms earlier and act sooner. Karen's representing NBCA at #CHEST2025 medical conference this week to share how education, awareness, and collaboration can save lives.

#EveryBreathMatters #StopTheClot #PulmonaryEmbolism #LungHealth #CancerAwareness

New research shows that delays in diagnosing blood

New research shows that delays in diagnosing blood clots dramatically increase the risk of death. Nearly 80% of patients in the study waited more than 24 hours for a confirmed diagnosis, and those delays tripled mortality in some hospitals.

Blood clots often start with vague symptoms like shortness of breath, chest pain, or leg swelling. Early recognition saves lives. Trust your instincts. If something feels wrong, speak up, and advocate for urgent evaluation.

👉 Read the article: Link in bio.

#StopTheClot #BloodClots #DelayedDiagnosis #BloodClotDiagnosis

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