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

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NBCA Issues a Call to Action at Historic Dinner Celebrating 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 🎙️

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

🎙️ New Episode Alert! 🎙️ Season 3, Epis

🎙️ New Episode Alert! 🎙️

Season 3, Episode 1 of Taking a Breath: A Stop the Clot podcast is now available on all major podcast platforms.

Listeners hear from Rebekah Bradford, a former competitive speed skater who represented Team USA in the 2010 Olympics in Vancouver.

Rebekah describes going on estrogen-based birth control, not realizing at the time that she had factor V Leiden, a genetic condition that increases blood clot risk.

Almost right away, she began having calf pain, which moved to her lungs.

“When I called my doctor and said I was experiencing these symptoms, the answer back to me was that this is a new medication. Your body is getting used to it. Don’t worry about it,” she said.

She saw other doctors over the next few months, but none reached the correct diagnosis until she finally went to the ER and got the help she needed.

Thank you, Rebekah, for sharing your story and helping raise awareness. Listen to her journey on our website or wherever you get your podcasts: Link in bio!

#StopTheClot #StopTheClotPodcast #BloodClotPodcast @bekahbrad

🏅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.

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

“Blood clots. My demise, my fear, my downfall. My strength, my perseverance, my story. I was born with two genetic mutations that greatly increase my risk of blood clots.

When I was 21, I was given pain medication for debilitating pain that turned out to be a DVT. Three months later, I experienced a pulmonary embolism so I was switched to a different anticoagulant requiring 2x daily injections.

Another 10 years went by without any issues. My hematologist retired and I had to find a new one. She decided it was time for me to try another drug that had been on the market for a while. The first one gave me side effects. Her next option was to try aspirin. I pushed hard against the idea. My clotting disorder does not form clots that aspirin usually helps with. It was only a matter of time.

My third bout of clots occurred this past year and was severely debilitating. My clots caused postural tachycardia syndrome (POTS) which led to more issues. I was hospitalized 6+ times from September to February. I threw up daily for two months and lost 16 lbs. It was horrific physically and mentally. I truly think people go through things in life that only make them stronger. This one broke me.

Medical trauma is no joke. As a physical therapist, I work hard to educate all my patients about their diagnoses and how we were going to treat them.

I started back to run/walking to retrain my heart. It is not only getting me back on my feet but also helping to build my mental strength. I am happy to support Team Stop the Clot as one of their NYC Marathoners for 2025. This will be my 6th World Major Marathon and I couldn't think of a better way to finish this race, with a group that understands the severity of blood clotting. ”

Leave an uplifting comment or donate: Link in bio.

#StopTheClot #NYCMarathon

Shaun developed sudden shortness of breath and che

Shaun developed sudden shortness of breath and chest pain after testing positive for Covid. She thought she had developed pneumonia, but she was diagnosed with two pulmonary emboli.

👉 Read her full story and others: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #PulmonaryEmbolism

🎊 Exciting news — we are closing in on our g

🎊 Exciting news — we are closing in on our goal for our summer fundraising campaign! Thanks to your generosity, we’ve raised nearly $150,000 of our $200,000 goal!

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 sixth winner is Brooke T. of Arlington, VA, 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

After developing leg cramping following a minor ca

After developing leg cramping following a minor car crash, Kailea was told that young people don’t get blood clots. Weeks later, an extensive DVT cost her her leg.

Her message: Listen to your body because doctors and tests can be wrong.

Read Kailea’s full story and read others: 🔗in bio.

#StopTheClot #BloodClots #VTE #Amputee #BloodClotAwareness

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