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January 2021 e-Newsletter

JANUARY E-NEWSLETTER: CONTINUING OUR WORK IN 2021

It’s a new year, but our mission remains the same. We’re looking forward to our …

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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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NBCA Issues a Call to Action at Historic Dinner Recognizing the Nation’s First Blood Clot Prevention Law

The National Blood Clot Alliance (NBCA) issued an urgent call to action for state and federal leaders to advance blood…

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

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

We did it together! Thanks to our incredible comm

We did it together!

Thanks to our incredible community, NBCA’s summer campaign raised $248,181.57, far surpassing our goal!

Earlier this year, the CDC’s Division of Blood Disorders and Public Health Genomics—NBCA’s key federal partner—was dismantled, putting lifesaving blood clot education and awareness programs at risk.

Our community stepped up in a big way to fill that gap. NBCA President Leslie Lake matched $100,000 in donations, doubling the impact of every gift!

The funds raised are already helping to:

✅ Deliver PEP Talks and other patient/public health education

✅ Provide patient resources and support

✅ Empower survivors through the Thrombassador program

✅ Reach high-risk, underserved communities

✅ Recognize healthcare institutions demonstrating excellence in blood clot care with NBCA VTE Centers of Excellence

✅ Advocate for better blood clot policies at the state and federal levels

Every year, 900,000 Americans are affected by blood clots, and 100,000 lives are lost—most preventable. To everyone who donated: THANK YOU!

Even if you weren’t able to give this time, you can still be part of our lifesaving work. Learn more, join a program, or spread awareness in your community—every action counts.

💪 Together, we’re helping Stop the Clot!

Read the article: Link in bio! Many blood clot s

Read the article: Link in bio!

Many blood clot survivors will see themselves in this Wall Street Journal story.

After experiencing a post-surgical pulmonary embolism, Melissa, an editor at the WSJ, wrote a piece in August about her experience.

The response from readers was powerful. Hundreds of blood clot survivors wrote in with their own stories of misdiagnosis, difficult recoveries, genetic testing, and the lingering anxiety that often follows a clot.

She wrote a follow-up piece summarizing the response and key takeaways, including:

• Blood clots can be misdiagnosed, even in young, active people

• Recovery can take longer than expected, and “normal” may change

• Genetic testing (like for factor V Leiden) can be an important step

• The mental and emotional impact of surviving a clot is real

If you are recovering from a blood clot, you are not alone. Stories like these help remind us why awareness, advocacy, and patient support matter.

👉 Read the full piece in the Wall Street Journal: Link in bio

#StopTheClot #BloodClots #PulmonaryEmbolism #BloodClotAwareness #WallStreetJournal

Something incredible happened this summer. People

Something incredible happened this summer. People across the world stepped up to raise awareness, provide support, and save lives from blood clots.

Thanks to our generous community, we are less than $2,000 away from reaching our summer campaign goal! Every donation has been matched dollar-for-dollar by NBCA President Leslie Lake—doubling your impact instantly.

‼️ The campaign ends TONIGHT at 1�1:59 p.m. ‼️ Here’s your chance to make a meaningful and immediate impact for people affected by or at risk of blood clots:

✅ Donate today: Your gift is instantly doubled!�

✅ Register for the Fun Run: Registration fees and fundraising will be matched through 11:59 p.m. tonight and count towards the campaign. �

✅ Give stock: A tax-smart way to create even bigger impact, and also counts towards the campaign.�

Every dollar matters. Every minute counts. With your support, we can hit 100% of our goal and keep lifesaving education, awareness, and patient support going strong. 💪

Donate: Link in bio.

#StopTheClot #BloodClots #BloodClotAwareness #BloodClotFunding

It’s the final day for matching! Don’t miss yo

It’s the final day for matching! Don’t miss your chance to double your impact when you register for NBCA’s 6th Annual Fun Run.

This virtual event takes place October 10–13 in recognition of World Thrombosis Day on October 13. Choose your distance—1 mile, 5k, or 10k—and participate from anywhere while helping raise awareness about blood clots.

If you register and/or raise funds by 11:59 p.m. TONIGHT (September 30), NBCA President Leslie Lake will match your registration fee and every dollar you raise. That means your support goes twice as far to fuel NBCA’s mission of education, awareness, and patient support.

Register today: Link in bio!

#StopTheClot #NBCAFunRun #BloodClotAwareness #WorldThrombosisDay

🏅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.

🏃‍♀️ Donald Brown of The Colony, TX shares why he’s running for Team Stop the Clot:

“I am running for two who are dear to me. Kim, my bride, has survived three clots. Thankfully we both advocated for ultrasound that found the most recent threat.

Kim is now doing great and I’ll run this year’s NYC marathon alongside my warrior bride!

I’m also running in memory of my mom, Eleanor, who died of a pulmonary embolism after a hip replacement four years ago. Surgical clots are deadly and often not recognized as major risks by most people. Help us raise awareness!”

Leave an uplifting comment or donate: Link in bio.

#stoptheclot #teamstoptheclot #bloodclots #nycmarathon #bloodclotawareness

At work, Nicole’s vision and speech suddenly dis

At work, Nicole’s vision and speech suddenly distorted. One ER sent her home with a mirgraine, but the second hospital found a blood clot in her brain, or cerebral venous sinus thrombosis (CVST). Her clot has resolved, but she’s managing lingering effects and depression. Her advice: advocate for yourself.

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

#StopTheClot #StopTheClotStory #BloodClots #CVST

In 1998, Pellayia lost her mother, Peggy, to a sud

In 1998, Pellayia lost her mother, Peggy, to a sudden blood clot in her lung, called a pulmonary embolism. After her passing, the family learned Peggy had the sickle cell trait (SCT) and other inherited blood conditions that raise clot risk. Pellayia and other relatives also carry these genes.

🩸Sickle cell disease (SCD) is a blood disorder that makes red blood cells stiff and sickle-shaped, which can block blood flow.
🩸SCT means a person carries one sickle gene and one normal hemoglobin gene.

During Sickle Cell Awareness Month (September), we’re highlighting that both SCT and SCD can raise the risk of blood clots.

In the U.S., about 1–3 million people have SCT and 100,000 live with SCD. People with SCD are four times more likely to get blood clots.

Know the signs of a blood clot:

- Swelling or pain in your leg
- Sudden shortness of breath
- Chest pain

⚠️ Seek emergency care right away if these occur.

More on signs and symptoms of blood clots: Link in bio.

#StopTheClot #BloodClots #SickleCellAwarenessMonth #SCT #SCD

🌟 Celebrate Family Health & Fitness Day 2025! 🌟

Today we’re celebrating Family Health and Fitness Day, a reminder to move your body, schedule preventive screenings, and make healthy choices for you and your family.

Take action with us: Sign up for NBCA’s 6th Annual Fun Run in honor of World Thrombosis Day (October 13)!

Between October 10–13, choose to run, walk, or roll a mile, 5K, or 10K from anywhere.

If you sign up before Sept. 30., your registration fee will count toward our summer campaign and will be matched by NBCA President Leslie Lake, doubling your impact!

Stay active, connect with others, spread awareness, and honor your journey to recovery. Let’s keep moving together.

Sign up: Link in bio!

#StopTheClot #NBCAFunRun #BloodClotAwareness #WorldThrombosisDay

✈️ After a flight from California to New York,

✈️ After a flight from California to New York, Maudi developed severe, lingering calf pain. The ER suspected a muscle strain, but she insisted on more testing, which revealed a DVT. Her takeaway: you’re never too young for a blood clot.

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

#StopTheClot #StopTheClotStory #BloodClots #BloodClot Prevention

🎉 Summer match campaign update: We are so close

🎉 Summer match campaign update: We are so close to our goal! Because of your generosity, we’ve raised just over $178,000 of our $200,000 goal. We’re 89% of the way there with just 11% left to go!

If you haven’t contributed yet, there’s still time. NBCA President Leslie Lake is matching every donation to this campaign through Sept. 30, doubling your impact!

To show our gratitude for everyone who has supported our fundraiser, we’re giving away Stop the Clot gear every week through the end of the month.

📣 Our seventh winner is Christy P. of San Jose, CA, who gets an NBCA boat bag. Congratulations!

You can enter TWO ways:

1️⃣ Donate: Every donation = 1 entry. Already donated? You’re in! Want better odds? Make another gift to boost your chances!

2️⃣ Share & Like: Share and like this post = 1 entry.

Giveaway Details:

Winners are announced every Friday.

All donations support NBCA’s mission to raise awareness, provide patient support, and save lives.

Don't miss your chance to win Stop the Clot swag and make a meaningful impact.

👇 Let us know you entered by commenting below!

🎁 Donate: Link in bio

#StopTheClot #BloodClots #FundraisingFriday #BloodClotAwareness

🌍 Today is World Contraception Day! 🌍 When

🌍 Today is World Contraception Day! 🌍

When it comes to contraception, knowledge equals power. If you’re considering starting birth control or switching your method, it’s crucial to know your risk.

Did you know that some hormonal contraceptives, like the patch, delivers more estrogen overall than most combined pills or rings and has been linked to a higher risk of blood clots?

It’s not just about the type of contraceptive — your personal risk factors matter too: age, family history, obesity, smoking, or known clotting disorders all play a role and further increase your risk for blood clots.

Know the signs of a clot and seek emergency care if you experience these symptoms:
• Leg: swelling, pain/tenderness, warmth, discoloration (usually one side)
• Lungs: sudden shortness of breath, chest pain, rapid heartbeat, coughing up blood

Stay informed, stay safe, and talk to your doctor to choose the safest and more effective method for you.

Know your risk ➡️ Link in bio.

#StopTheClot #WorldContraceptionDay #BloodClots #BloodClotPrevention #WomensHealth

On World Lung Day, remember: blood clots in the lu

On World Lung Day, remember: blood clots in the lungs (pulmonary embolism) are a leading cause of preventable death. In the U.S., someone dies from a blood clot every six minutes. Awareness and fast action save lives.

Warning signs:
• Sudden shortness of breath
• Chest pain that worsens with deep breaths
• Rapid heartbeat, lightheadedness, or fainting
• Unexplained cough (sometimes with blood)

If you notice these symptoms, call 9-1-1 or go to the ER.

Prevent blood clots by moving often, hydrating, and talking to your doctor about prevention after surgery, during pregnancy, with cancer treatment, or if you have an inherited thrombophilia.

Learn more: Link in bio.

#StopTheClot #WorldLungDay #BloodClotPrevention

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