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December 2019

DECEMBER E-NEWSLETTER | SEASON’S GREETINGS FROM NBCA

This past year gave way to many shining moments for the National Blood Clot Alliance (NBCA), as …

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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 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

🌍 News Release: NBCA Expands Global Medical Lea

🌍 News Release: NBCA Expands Global Medical Leadership

The National Blood Clot Alliance (NBCA) is proud to announce the appointment of Dr. Erik Klok, world-renowned thrombosis expert from Leiden University Medical Center (Netherlands), as the first European member of NBCA’s Medical & Scientific Advisory Board (MASAB).

This historic milestone reflects NBCA’s growing commitment to address venous thromboembolism (VTE) as a global health crisis—advancing education, advocacy, and patient support far beyond U.S. borders.

“VTE knows no borders,” said Dr. Klok. “Around the world, patients are experiencing unacceptable gaps in care. I’m honored to join NBCA’s MASAB and help bring critical awareness and resources to global communities.”

With leadership from Dr. Klok, MASAB Chair Dr. Alok Khorana (Cleveland Clinic), and NBCA President Leslie Lake, NBCA is broadening its reach to save lives worldwide through collaboration, innovation, and patient-centered care.

#StopTheClot #VTEAwareness #GlobalHealth #Thrombosis #MedicalLeadership #PatientAdvocacy #MASAB

Thrombophilia testing can provide important clues

Thrombophilia testing can provide important clues about why a blood clot occurred and how to lower future risk. But deciding if and when to test—especially while on an anticoagulant—can be complicated.

Our next PEP Talk on Tuesday, Nov. 11 at 7 p.m. ET demystifies the process so you can make informed choices with your care team.

We’ll discuss:

✅ What thrombophilia testing is and the common conditions it looks for
✅ Who might benefit from testing and who may not
✅ How blood thinners and timing can affect certain test results
✅ What results can mean for treatment duration, family testing, pregnancy care, and procedures
✅ Questions to ask your clinician to decide on next steps

Join us to understand the purpose of testing and how it fits into your overall care plan. Register: Link in bio.

#StopTheClot #BloodClots #VTE #PEPTalk #ThrombophiliaTesting

🚨 PEP Talk Update 🚨 Tonight’s PEP Talk on

🚨 PEP Talk Update 🚨

Tonight’s PEP Talk on Children & Blood Clots has been postponed. We apologize for any inconvenience and appreciate your understanding. We’ll share the new date soon—stay tuned!

In the meantime, learn more about Blood Clots in Children here: https://www.stoptheclot.org/about-clots/blood-clots-in-children-resources/

#PEPTalk #StopTheClot #BloodClots #PediatricBloodClots #PediatricVTE

💔 It started with a fast heartbeat. On a Frida

💔 It started with a fast heartbeat.

On a Friday in February 2021, I noticed my heart rate was racing — even when I wasn’t doing much. By Monday, I had chest pain and could barely catch my breath.

By Tuesday, something in me said go to the hospital. After nearly passing out several times in the ER, I learned the truth:
➡️ I had bilateral pulmonary emboli — blood clots in both lungs. I was scared, confused, and alone.

The doctors told me my birth control pills were likely to blame. I was admitted immediately and started on blood thinners. Later, I saw a hematologist and found out I also have Factor II gene mutation, which—combined with the pills—triggered the clots.

Since then, I’ve lived with constant anxiety — blood clots are something I’ll have to think about for the rest of my life: before travel, surgeries, even pregnancy. It can be overwhelming at times, but I’m grateful every day that I trusted my instincts and listened to my body when something felt off. I know this could have ended up much worse.

🩸 Blood clots can happen to anyone. Always trust your instincts!

👉 Read & submit patient stories at the link in bio.

#StopTheClot #StopTheClotStory #BloodClots #PE #HealthAnxiety #BloodClotSurvivor #BirthControl #FactorII #Thrombophilia

The National Blood Clot Alliance will be at the Am

The National Blood Clot Alliance will be at the American College of Chest Physicians Annual Meeting in Chicago next week! We’re excited to connect with this clinical community to discuss the latest in pulmonary embolism prevention, diagnosis, effective treatment, and of course, patient advocacy.

We'll also be sharing patient resources and real-life experiences to help clinicians better understand the challenges we face as patients.

📣 What’s the number one thing you want the clinical community to know about your patient experience? Let us know in the comments!

#StopTheClot #BloodClots #CHEST2025 #VTE

🌍 World Thrombosis Day: Together, We Can End Th

🌍 World Thrombosis Day: Together, We Can End This Global Health Crisis

Today, on #WorldThrombosisDay, we unite with organizations and individuals around the world to shine a light on one of the most urgent — yet often overlooked — health crises: blood clots.

Every year, millions of people are affected by blood clots, but with awareness, education, and collaboration, most of these tragedies can be prevented. Ending this global health crisis takes all of us — patients, healthcare professionals, advocates, and supporters — working together to stop the clot. ❤️🩸

🏃‍♀️ Today is also the final day of NBCA’s Race to Stop the Clot® Fun Run!
To everyone running, walking, or rolling this weekend — thank you for raising awareness and funds to save lives. Your steps move us closer to a world where fewer families are affected by blood clots.

📸 Share your photos and tag @StopTheClot and #RaceToStopTheClot to show how you’re part of this movement.

👉 Haven't signed up yet? It's not too late! bit.ly/NBCAFunRun2025 *Link in bio*

Together, we can #StopTheClot and make blood clots history. 🌎💪 @worldthrombosisday

📅 HAPPENING TOMORROW: Our next PEP Talk on Tues

📅 HAPPENING TOMORROW: Our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. ET will focus on pediatric blood clots — why they happen, how they’re diagnosed, and what treatment and recovery can look like.

When a child develops a blood clot, it can be frightening and confusing for parents and caregivers. Our medical expert, Neil Goldenberg, MD, Ph.D, pediatric hematologist from Johns Hopkins All Childrens Hospital, will answer your questions.

🔗 Register: Link in bio.

📨 (If you can’t attend the live event, register anyway to receive the recording in your inbox!)

#StopTheClot #BloodClots #PEPTalk #PediatricVTE

🤓 If you want to educate yourself on pediatric

🤓 If you want to educate yourself on pediatric blood clots in advance of our PEP Talk next week, we’ve got you covered!

Explore our resource on blood clots in children, created by Neil Goldenberg, MD, Ph.D, a pediatric hematologist at Johns Hopkins All Children’s Hospital and a leading expert and researcher on blood clots and children. 👉Get it at the link in bio!

Dr. Goldenberg joins us for our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. ET. We hope to see you there! 🔗 Register: Link in bio.

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

#StopTheClot #BloodClots #PEPTalk #PediatricVTE

It's GO TIME! The Weekend Race Starts Today! Look

It's GO TIME! The Weekend Race Starts Today!

Looking for a way to get involved and recognize World Thrombosis Day? Join NBCA’s 6th Annual Race to Stop the Clot® Fun Run — happening now through October 13.

🏃‍♀️ Pick your distance: 1 mile, 5K, or 10K
🌍 Participate anywhere, anytime
💲 $35 registration — 100% tax-deductible
🎁 Raise $50+ → earn a custom race shirt
💙 Donate $100+ → your registration is free!

Every step brings awareness to blood clots and helps save lives through education and advocacy.

👉 Sign up today and make your miles matter: https://runsignup.com/Race/PA/Philadelphia/RaceToStopTheClotFunRun
🔗Link in bio
#RaceToStopTheClot #StopTheClot #WorldThrombosisDay #FunRun #BloodClotAwareness #TeamStopTheClot

Jamie’s charley horse and pressure in her chest

Jamie’s charley horse and pressure in her chest were dismissed, leaving her feel unheard and uneasy. As her symptoms worsened, she almost didn’t get checked out because of her previous experience, but that decision to go to the ER saved her life.

Jamie feels fortunate that a friend shared Stop the Clot resources with her, including PEP Talk, and all that she learned. How did you find your way to the National Blood Clot Alliance (stoptheclot.org)? Tell us in the comments!

👉 Read other patient stories and submit your own: Link in bio.

#StopTheClot #BloodClots #DVT #PE #BloodClotAwareness

🧠 World Mental Health Day: Addressing the Hidde

🧠 World Mental Health Day: Addressing the Hidden Impact of Blood Clots

Today, on World Mental Health Day, we recognize that living with blood clots, or supporting someone who is, can take a toll not just on the body—but on the mind as well. Anxiety, fear, and stress are real parts of the journey for patients and caregivers alike. If you're navigating life after a blood clot, know that you're not alone.

📝Resources are here:
- Mental Health Guide: A resource to help you begin your mental health recovery.
- PEP Talk: The Emotional Aftermath of Blood Clots: An insightful discussion on the psychological impact of blood clots.
- Facebook Support Group: A safe space to connect with others who understand your experience.
🔗Access these resources and more at the link in bio.

Remember, it's okay to not be okay. Seeking help is a sign of strength, not weakness. Reach out, share your story, and take care of your mental health—just as you do your body.

#WorldMentalHealthDay #StopTheClot #MentalHealthMatters #BloodClotAwareness #CLUESStudy #NBCA #VTEAwareness

Madison was diagnosed with May-Thurner syndrome an

Madison was diagnosed with May-Thurner syndrome and a DVT at 14. William started developing a DVT before birth. Karlie’s leg pain was mistaken for an injury. Finley’s pulmonary embolism symptoms weren’t taken seriously.

These are just a few stories of people under 18 years old who have experienced a blood clot. Pediatric blood clots are less common than clots in adults, but they’re just as life-threatening. 🔗Read their stories: Link in bio.

Join our next PEP Talk on Tuesday, Oct. 14 at 7 p.m. ET for a discussion on children and blood clots with pediatric hematologist Neil Goldenberg, MD, PhD.🔗 Register: Link in bio.

Awareness saves lives — we hope you’ll join us! If you can’t make the live event, register anyway to get the recording sent to your inbox.

#StopTheClot #BloodClots #PEPTalk #PediatricVTE

🏅Countdown to race day! In November, Team Stop

🏅Countdown to race day! In November, 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.

🏃‍♀️ Mary Argilagos of Fair Haven, NJ shares why he’s running for Team Stop the Clot:

“I am honored to be running this race with my niece Jessica Bredin in memory of her father and my brother, James Bredin. It will be 10 years since his passing. We are still grieving the loss of an amazing man, and I want to raise awareness to others.”

Leave an uplifting comment or donate: 🔗 in bio!

#stoptheclot #teamstoptheclot #bloodclots #nycmarathon #bloodclotawareness

🏃‍♂️ The National Blood Clot Alliance's 6

🏃‍♂️ The National Blood Clot Alliance's 6th Annual Fun Run for World Thrombosis Day starts in two days!

You can choose to walk, run or roll a distance of one mile, 5K, or 10K anytime between October 10-13. However you choose to move, your participation matters! Every step we take raises awareness about blood clots and helps save lives.

There are many reasons why the blood clot community comes together every year for this event:

✅ Honor your own blood clot journey or support a loved one

✅ Remember those lost to blood clots

✅ Ease back into exercise after a clot

✅ Feel seen, show progress, and connect with other survivors

✅ Post on social media to share your “why” and spread awareness

✅ Involve your whole family, including pets

Let's come together to maintain our health, spread the word about blood clot prevention and treatment, and raise funds to support NBCA’s awareness and education programs.

🗓 Event Dates: October 10-13

📍 Location: Virtual

🔗 Sign Up Today: Link in bio.

#StopTheClot #BloodClots #WorldThrombosisDay #BloodClotAwareness #WTD2025

If you’re living with antiphospholipid syndrome

If you’re living with antiphospholipid syndrome (APS), we’d love to hear from you!

We are seeking individuals to participate in a research study that aims to understand the impact of APS on the lives of patients living with this condition.

✏️ Take the survey: Link in bio.

Principal investigator: Dr. Shruti Chaturvedi (Johns Hopkins University). Contact for additional information: 410-614-9604 or schatur3@jhmi.edu. Johns Hopkins IRB application number IRB00517218.

#StopTheClot #APS #AntiphospholipidSyndrome #APSSurvey

Getting back to movement after a blood clot? Start

Getting back to movement after a blood clot? Start here.

It can be scary to reintroduce exercise after a pulmonary embolism or deep vein thrombosis, as @tatyanamcfaddenusa, blood clot survivor and Paralympian, points out in this PEP Talk from earlier this year.

We have the perfect solution: Sign up for our virtual 6th Annual Fun Run for World Thrombosis Day, taking place virtually from Oct. 10-13.

Choose your distance (1 mile, 5K, 10K), your pace, and your place. Small steps add up!

Honor your journey and help spread blood clot awareness. 🔗 Register: Link in bio.

#StopTheClot #BloodClots #WorldThrombosisDay #BloodClotAwareness #WTD2025

After a 15-hour flight, Enisa stood to deplane and

After a 15-hour flight, Enisa stood to deplane and suddenly couldn’t breathe. She collapsed from a sub-massive bilateral pulmonary embolism. Enisa was later diagnosed with antithrombin III deficiency, a blood clotting disorder associated with an increased risk for blood clots. Today, she’s grateful for her “bonus days.”

Read her full story and others: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #DVT #PE #Antithrombin3Deficiency

🚨 Kids & Blood Clots: What Parents and Caregive

🚨 Kids & Blood Clots: What Parents and Caregivers Need to Know

Kids can develop blood clots, especially if they have:
🩺 Central lines in the hospital
🎗 Cancer treatment
❤️ Heart conditions
💊 Teens on estrogen-containing birth control plus family history or genetic risk

Symptoms can mimic other conditions, which can delay diagnosis and treatment.

📅 Tuesday, Oct. 14 | 7 p.m. ET
Join us for our October PEP Talk with special guest, Dr. Neil Goldenberg, MD, PhD, pediatric hematologist.

Topics include:
✅ Who’s at higher risk
✅ Prevention strategies
✅ Activity & sports on blood thinners
✅ Recovery & long-term effects

💻 Register now: bit.ly/Oct2025PEPTalk

#StopTheClot #PediatricHealth #BloodClots #VTEAwareness #KidsHealth #PEPTalk #Thrombosis #ChildHealth #PreventBloodClots #HealthyKids #PediatricHematology #MedicalEducation

At 24 years old, Sarah endured two months of sever

At 24 years old, Sarah endured two months of severe headaches and vision changes before doctors finally discovered CVST, a dangerous brain blood clot. Misdiagnosed with a migraine and anxiety, she trusted her instincts and pushed for answers. That fight saved her life.

👉 Read Sarah’s full story and others: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #CVST

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