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AC Forum 15th National Conference

January e-Newsletter | Connect with a Community that Cares

As 2019 gets underway, NBCA would like to take this opportunity to wish you a joyous and …

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Charitable Giving is Changing in 2026 What Every Donor Should Know

Charitable Giving Is Changing in 2026: What Every Donor Should Know

Starting in 2026, new federal tax rules will affect how charitable giving is treated — and when you choose to…

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

❤️🩸 “I’m 30 years old and have a compli

❤️🩸 “I’m 30 years old and have a complicated medical history. As a teenager, I was diagnosed with fibromyalgia and Ehlers-Danlos syndrome, and today I manage more than 20 different health conditions.

On April 20, 2021, I felt severe pain in my left leg. It was swollen, purple, and hot to the touch. I called my doctor, who told me to go to the ER right away because it could be a blood clot.

I remember thinking, ‘I’m only 25 — how could I have a blood clot?’ But tests confirmed it: I had a deep vein thrombosis (DVT) in my left leg, and scans showed blood clots in both lungs (pulmonary embolisms). I was shocked and scared.

Because the ER wasn’t connected to a hospital, I was transferred by ambulance and started on a blood thinner through an IV. I spent a day there and was sent home on medication called rivaroxaban. Later testing showed I have a genetic condition called factor V Leiden, which makes blood clots more likely. Some of my relatives had it too and sadly died from clots.

Six months later, I developed more clots in both legs. I spent six days in the hospital and learned that the first medication hadn’t worked for me. My doctors switched me to warfarin, another blood thinner that requires regular testing to make sure it’s working safely.

Because I couldn’t easily leave home, my mom helped me advocate to get blood tests done at home. Insurance approved it, and now I use a small device to test my blood by pricking my finger—just like someone checking their blood sugar.

No matter how young or healthy you think you are, blood clots can happen to anyone—especially if you have a condition like factor V Leiden. I never thought it could happen to me, but it did. And I hope my story reminds others to listen to their bodies and speak up if something doesn’t feel right.”

👉 Patient’s Guide to INR Testing: Link in bio.

👉 More stories: Link in bio.

#StopTheClot #StopTheClotStory #FactorVLeiden #BloodClots #DVT #PE #BloodClotAwareness

In response to our recent post, so many of you sha

In response to our recent post, so many of you shared your experiences with blood clotting disorder testing — also called thrombophilia testing — and no two stories were the same.

➡️ One person learned she had a prothrombin gene mutation after five miscarriages and was later diagnosed with antiphospholipid syndrome.

➡️ Another experienced a clot during military training that was initially dismissed as a muscle strain. Testing later showed she is positive for factor V Leiden.

➡️ Some learned about their inherited risk after multiple pulmonary emboli and now worry about whether their children could have inherited the same condition.

➡️ Others have faced repeated clots without a clear answer despite extensive testing.

These stories show just how complex thrombophilia testing can be and why communication, timing, and access to care are so important.

Join us for our next PEP Talk, Thrombophilia Testing While on Blood Thinners, on Tuesday, November 11 at 7 p.m. ET to learn more about who should get tested, when, and why. Plus, your rights and options if you’re interested in testing that isn’t routinely recommended.

💻 Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots

💡 A Smarter Way to Give This Year-End As you p

💡 A Smarter Way to Give This Year-End

As you plan your charitable giving for the year, consider a smarter way to make a difference — by donating appreciated stock to the National Blood Clot Alliance (NBCA).

When you donate stock instead of cash, you can:

✅ Avoid paying capital gains tax
✅ Receive a charitable deduction for the full market value
✅ Make a greater impact without spending more

It’s simple, secure, and your stock gift supports NBCA’s mission to save lives through education, awareness, and advocacy for the millions affected by blood clots each year.

✨ Give smarter. Save more. Stop the Clot.

Donate Stock Today ➡️ Link in bio.

#YearEndGiving #SmartGiving #Philanthropy #FinancialPlanning #StockDonations #StopTheClot #BloodClotAwareness

🩸 Our October Newsletter is live!

This month’s issue features:

• Our Shared Decision-Making Guide to help patients and providers navigate thrombophilia testing, plus details on our November PEP Talk on this topic

• Stories of two mothers turning loss into action to raise blood clot awareness and save lives

• New ways to support NBCA and strengthen our mission

• Research opportunities, and so much more!

Don’t miss the latest blood clot news, including updates in awareness, research, advocacy, treatment, and community impact.

💌 Read the October issue and subscribe for future updates: Link in bio!

#StopTheClot #BloodClots #NBCA #BloodClotNewsletter #BloodClotAwareness

🏅 #TeamStopTheClot Conquers the 2025 @NYCMarath

🏅 #TeamStopTheClot Conquers the 2025 @NYCMarathon!

After months of dedicated training and fundraising to support NBCA’s mission, Team Stop the Clot runners took on—and conquered—the TCS New York City Marathon on Sunday!

It was a thrill watching our runners fly by in our signature red and white polka dots. Together, they not only crossed the finish line but also raised more than $120,000 to advance blood clot awareness, education, and patient support. We couldn’t be prouder!

A heartfelt thank you to every runner, donor, and supporter who made this possible. Your dedication fuels NBCA’s life-saving work to educate, support, and empower those affected by or at risk for blood clots.

Special thanks to pulmonary embolism survivor and professional runner @SageCanaday for coaching our team to success, and to @HOKA for hosting our first-ever pre-marathon shakeout run and providing some awesome swag bags!

👀 Interested in joining Team Stop the Clot for the 2026 TCS New York City Marathon? Be the first to know when applications open: Link in bio!

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

Thinking about thrombophilia testing while taking

Thinking about thrombophilia testing while taking a blood thinner? You’re not alone. It’s one of the most common questions patients ask.

Join us for our next PEP Talk to learn what thrombophilia testing really means and how timing, medication, and results can shape your care. Our medical expert, Dr. Dana Angelini, will cover:

✅ Who might be tested: Factors your healthcare provider may consider
✅ When testing is done: Certain blood thinners can affect results, so timing matters
✅ Why testing is ordered: To understand inherited risks and guide prevention or treatment decisions
✅ How results may impact care: From medication choices to long-term management plans

We’ll also discuss how to protect yourself and your family if you’ve tested positive, what to know about your rights and options if you’re interested in testing that isn’t routinely recommended, and hear from patients about their experiences.

Understanding thrombophilia testing isn’t just about lab work — it’s about making informed choices for your long-term care and peace of mind.

📅 Tuesday, November 11
🕖 7 p.m. ET
💻 Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots

🩸 Thinking about thrombophilia testing while on

🩸 Thinking about thrombophilia testing while on a blood thinner? It’s not always straightforward.

Testing can offer valuable insights into long-term clotting risk, help identify inherited conditions that may affect family members, and guide future care decisions, such as how long to stay on anticoagulation or how to manage pregnancy or surgery.

But timing matters. Results are often less accurate while on blood thinners, and for many people, testing won’t change their treatment plan. It can also cause unnecessary worry or add unexpected costs.

We hope you’ll join us for our November PEP Talk to learn when thrombophilia testing is useful and when it may not be.

📅 Tuesday, November 11
🕖 7 p.m. ET
💻 Register: Link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots

“I’m a 63-year-old man and have experienced tw

“I’m a 63-year-old man and have experienced two instances of blood clots (deep vein thrombosis, or DVTs) in my left calf. The first happened in 2018, shortly after being diagnosed with stage one lung cancer. I had surgery to remove the lower part of my left lung and followed regular scans for five years before being declared cancer-free.

For a while, I was in great shape and exercised regularly. But over the past few years, life got busy — I was working a lot, earning my master’s degree in Information Systems Management, and teaching my first class on Microsoft Apps. During that time, I gained about 50 pounds.

Earlier this year, I started swimming again, about 1.5 miles three times a week, to safely lose weight. I had dropped 10 pounds when I noticed pain in my calf. I assumed it was a muscle strain from swimming, but the swelling got worse. I was admitted to the hospital and treated for another DVT. I spent four days on a blood thinner while doctors monitored me for potential clots in my heart or lungs.

A CT scan showed some enlarged lymph nodes in my chest, so I followed up with both oncology and cardiology. Thankfully, my PET scan came back negative, and a later scan showed the lymph nodes were normal, so I canceled the biopsy. I’ll continue to get yearly CT scans because of mild emphysema and a small lung nodule my doctors are watching.

Now, I’m back to exercising and focusing on my health again. I still have some swelling in my lower leg, but it’s improving. I have a cardiac angiogram scheduled soon, and I’m continuing on apixaban permanently. I actually discovered this group while watching a YouTube video about blood clots, and I’m grateful to have found a community that understands what this journey is like.”

More stories: Link in bio.

#StopTheClot #StopTheClotStory #BloodClots #DeepVeinThrombosis #Cancer

It’s race day! 🗽🏃‍♀️🏃‍♂️ A

It’s race day! 🗽🏃‍♀️🏃‍♂️

After months of training and fundraising, the members of #TeamStopTheClot are proudly wearing their red and white polka dots and hitting the streets of New York City for the @nycmarathon!

Each runner has a personal connection to our mission, inspired by their own experience or that of someone they love. Today, they’re running 26.2 miles to raise awareness about blood clot risks, signs, and symptoms, and to support those affected.

Send your cheers and encouragement in the comments! If you’re in New York, join our Stop the Clot cheer zone at 91st Street and 1st Avenue in Manhattan!

🏃 Not all members of #TeamStopTheClot are runni

🏃 Not all members of #TeamStopTheClot are running today — some are helping keep runners safe!

We’re proud to recognize Dr. Caroline Cromwell of @themountsianihospital and NBCA Medical and Scientific Advisory Board member who is volunteering as one of the @nycmarathon's on-site physicians along the marathon course today.

Dr. Cromwell and her fellow medical volunteers play a vital role in ensuring runners stay safe and healthy throughout the race, all the way to the finish line!

Thank you, Dr. Cromwell, for your dedication to both the athlete and patient communities. Good luck, runners!

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

🏁 Race Day Spotlight: Tatyana McFadden, PE Surv

🏁 Race Day Spotlight: Tatyana McFadden, PE Survivor + Champion Athlete

Today, as runners and wheelchair racers take on the @nycmarathon, we’re cheering for @TatyanaMcFaddenUSA — Paralympic legend, five-time NYC Marathon champion, and pulmonary embolism survivor — as she competes once again in the wheelchair division.

Tatyana joined NBCA’s Taking a Breath podcast to share her powerful story and how she’s using her platform to raise awareness about blood clots in athletes. Her determination is an inspiration to our #TeamStopTheClot members and to everyone affected by blood clots.

👏 Join us in wishing Tatyana and all our Team Stop the Clot athletes strength, speed, and safety today!

🎧 Listen to Tatyana’s story on Season 1, Episode 2 of our podcast: Link in bio!

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

You tested positive for thrombophilia. Now what? 🤔

Join the National Blood Clot Alliance for our November PEP Talk with Dr. Dana Angelini of the @ClevelandClinic to learn what comes next after a positive test for a blood clotting disorder.

We’ll talk about what your results mean, how to protect yourself and your family, and how to make informed decisions about your care.

Not sure if you should be tested? You’ll also learn why clinicians don’t always recommend testing, hear patient perspectives, and explore how shared decision-making helps you and your care team decide what’s best for you.

📅 Tuesday, November 11
🕖 7 p.m. ET
💻 Register: Link in bio!

Get the facts — whether you’ve tested positive, are considering testing, or simply want to understand your rights and risks when it comes to thrombophilia.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots

🎃 This Halloween, here are five truly frighteni

🎃 This Halloween, here are five truly frightening facts about blood clots. They’re more common and deadly than most people realize:

1️⃣ 900,000 Americans are diagnosed every year

2️⃣ Blood clots kill more than HIV, breast cancer and car accidents combined

3️⃣ Fewer than 6% of Americans know what blood clots are

4️⃣ One person dies of a blood clot every six minutes in the U.S.

5️⃣ Blood clots kill 100,000 people in the U.S. every year

Knowledge saves lives. Don’t just share ghost stories today, share awareness. 🩸

#StopTheClot #BloodClotAwareness #Halloween

💪🩸 "Two weeks after a 68-mile bike ride, I c

💪🩸 "Two weeks after a 68-mile bike ride, I couldn’t straighten my leg, and my veins bulged.

The ER dismissed it as a bruise. I explained that it wasn’t a bruise, that I’d already seen multiple professionals, and that the pain was worsening. My vitals looked fine, but I told the doctor I was on estrogen-based birth control and needed a scan.

He ordered one and when the diagnosis came, I cried. The next day, the hospital called to check on me. I mentioned recent shortness of breath and they told me to return right away. That’s when they found a bilateral pulmonary embolism.

The diagnosis and blood thinners felt like a death sentence. I didn’t know how long I’d be on medication or if I’d ever get back to what I loved most: ski mountaineering, climbing, and ultramarathon running—the moments where body, mind, and mountain align.

I had a mix of risk factors: a healing leg injury, estrogen-based pills, the Factor V Leiden mutation, dehydration, and long hours of repetitive cycling.

I read everything I could about blood clots and returning to endurance sports. There’s a major gap in research about young, athletic people with clots. NBCA was incredibly supportive, as were survivors in the climbing community.

Still, I had many questions about high altitude and ultramarathon running after clots. Over time, I connected with other active survivors and met a high-altitude pulmonologist who gave me hope.

With help from a therapist, I began to trust my body again and manage my fear of recurrence. I listened closely to what my body was telling me. I started with hiking, then trail running, then mountain sports.

After three months, I was off blood thinners and entered the gray zone. What could my body do now? What couldn’t it? There was only one way to find out.

I set a big goal: skiing Denali, the tallest mountain in North America. Gradually, I got stronger. I made it to 14,000 feet on Denali before turning around due to weather—and I learned to love my body again."

#StopTheClot #StopTheClotStory #BloodClots #Denali #BloodClotRecovery

🚗 As thousands head to New York City for the @n

🚗 As thousands head to New York City for the @nycmarathon on Sunday, one mother’s message is lighting up highways across the state: pause the ride, take a stride.

After losing her 19-year-old son, Paul Jr., to a pulmonary embolism in 2013, Denise Englert of Clarence Center, NY, turned her grief into action. Partnering with Lamar Advertising, she helped secure donated digital billboards that remind travelers to move their legs, stretch, and take breaks to prevent dangerous blood clots.

Whether you’re driving long hours or flying in for race weekend, extended travel can raise your risk for deep vein thrombosis (DVT), especially if you’ve had a blood clot before. Stay safe on your trip to NYC with these simple tips:

🔹 Get up and move every hour

🔹 Do gentle leg and foot stretches while seated

🔹 Stay hydrated and limit caffeine and alcohol

🔹 Avoid crossing your legs

🔹 Wear loose clothing and a medical ID if you take an anticoagulant

🔹 Know the signs of a blood clot and seek care if symptoms appear

Thanks to Denise’s advocacy, travelers across New York are seeing these lifesaving reminders on the road, a powerful tribute to her son and a message that could save lives.

Learn more about preventing blood clots while traveling: Link in bio.

#StopTheClot #TCSNYCMarathon #NYMarathon #TeamStopTheClot #BloodClots #BloodClotPrevention @nyrr

🩺 The road to thrombophilia testing isn’t the

🩺 The road to thrombophilia testing isn’t the same for everyone.

In a 2022 NBCA webinar, Dr. Caroline Cromwell and Dr. Peter Kouides — both members of our Medical and Scientific Advisory Board — and a thrombophilia patient discussed how experiences can vary widely, from the decision to test, to the challenges of timing, to understanding what results mean.

As we prepare for our November PEP Talk, Thrombophilia Testing While on Blood Thinners (Tuesday, Nov. 11 at 7 p.m. ET), this conversation is a reminder of why patient education and communication matter so much.

🍿 Watch the full video and register for the PEP Talk: Links in bio!

#StopTheClot #ASH25 #ThrombophiliaTesting #BloodClots

🏃‍♀️🏃‍♂️ Marathon Day is the bes

🏃‍♀️🏃‍♂️ Marathon Day is the best day in New York City! Come cheer with us! 🎉

This Sunday, the 13 runners on Team Stop the Clot will be out in full force at the TCS NYC Marathon, running 26.2 miles to raise awareness and funds to prevent blood clots and save lives.

📍Find the NBCA cheer zone at 91st Street and 1st Avenue in Manhattan. Bring your signs, your spirit, and your loudest cheers!

Let’s make some noise for Team Stop the Clot!

🎙️ 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

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