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NBCA’s Newsletter

If you have news or information important to people affected by blood clots or clotting disorders, please email info@stoptheclot.org.

2024

News & Updates for the Blood Clot Community

October 2024 | Issue 5

UPCOMING EVENTS

November PEP Talk: Navigating Post-Thrombotic Syndrome, CTEPH and CTED

Post-thrombotic syndrome (PTS) is estimated to affect up to 60% of individuals with DVT. On Tuesday, Nov. 12 at 7 p.m. ET, we’ll look at PTS and other complications that can arise after a blood clot, including chronic thromboembolic pulmonary hypertension (CTEPH) and chronic thromboembolic disease (CTED), as well as new treatment options.

EVENT

Race to Stop the Clot Virtual Fun Run: Oct. 11-14

World Thrombosis Day takes place on October 13 every year to turn the world’s attention to blood clots.

Blood clots can be fatal, but they are also preventable. Help us spread awareness by participating in NBCA’s 5th Annual Virtual Fun Run between October 11-14 to commemorate World Thrombosis Day. It’s not too late to register!

View the Full Event Calendar

EVENT

NBCA Community Thrombassador Training

Named for the medical term for a blood clot, thrombus, our Community Thrombassador program is a network of patients and caregivers committed to spreading blood clot awareness in their communities on a volunteer basis. In just the past two months, our 120 Thrombassadors have organized more than a dozen outreach events across the country. Want to get involved? Attend our next Thrombassador training on Thursday, Oct. 17 from 10 a.m. to 2 p.m.

Learn More

FACES OF BLOOD CLOTS

Kourtney

“The doctor had to cut my pants off because my leg was so swollen. He looked at me and said, ‘I didn’t take you seriously at first but, I am taking you seriously now.’” —Kourtney, Hollis, NY

ADVOCACY

NBCA Joins Partner Organizations in the Get Out the Clot Campaign to Improve Patient Care

NBCA and partner orgs announced the Get Out the Clot campaign in advance of World Thrombosis Day (October 13) to identify gaps in blood clot patient care, standardize care, and expand access to the latest innovations to improve patient outcomes.

Learn More

CLINICAL TRIAL

Now Enrolling: Afib Patients Not Currently Taking a Blood Thinner

Afib patients may be interested in a new class of anticoagulants (blood thinners) currently being evaluated.

Learn More

FEATURED RESOURCE

Children and Blood Clots Resources

Thanks to Dr. Neil Goldenberg of Johns Hopkins Medicine, who is also on our Medical and Scientific Advisory Board, we’ve updated our resources on pediatric blood clots.

Learn More

SUPPORT OUR MISSION

Organize a Blood Clot Awareness Event

Did you know that you don’t need to be a Thrombassador to plan a blood clot awareness event? We’ve prepared this guide to help you turn your awareness event ideas into reality.

Get the Guide

YOUR VOICE MATTERS

Tell Us About Yourself!

Please take a moment to answer this quick survey question so we can better serve our community.

Have you ever listened to our podcast, Taking a Breath?

Yes

Season 2 of our podcast starts soon! Listen here:

Listen

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News & Updates for the Blood Clot Community

September 2024 | Issue 4

UPCOMING EVENTS

September PEP Talk: Blood Clots Across Diverse Identities

Did you know that blood clot risk factors are as diverse as the populations they affect?

From genetics to environmental conditions, social determinants of health, and even climate change — each factor plays a role in determining blood clot risks, but they don’t affect everyone the same way.

On Tuesday, Sept. 10 at 7 p.m. we discuss how these factors influence blood clot risks. Whether you’re personally affected or simply want to learn more, this PEP Talk is a must-attend!

EVENT

Race to Stop the Clot Virtual Fun Run: Oct. 11-14

World Thrombosis Day takes place on October 13 every year to turn the world’s attention to blood clots.

Blood clots can be fatal, but they are also preventable. Help us spread awareness by participating in NBCA’s 5th Annual Virtual Fun Run between October 11-14 to commemorate World Thrombosis Day.

EVENT

Train to Become an NBCA Community Thrombassador

Last month, we trained 23 new Thrombassadors who now have the tools and knowledge to spread blood clot awareness in their communities. Congratulations!

Inspired to join the blood clot awareness movement? Our next Thrombassador training is October 17.

View the Full Event Calendar

FACES OF BLOOD CLOTS

Mickey

“After two days of struggling to breathe, I seemed to be getting worse. My boss at the time was a pulmonologist. I explained that my chest hurt and I was having difficulty breathing and asked him if he would listen to my chest. He refused and said there was nothing wrong with me.” – Mickey, Vail, AZ

Blood clot survivors: Let’s hear your story

By sharing your blood clot story, you help to raise awareness, provide support, inspire others, build community, and heal. Every story matters!

Share Your Story

ADVOCACY

Erin VanDyke Leading NBCA’s Centers of Excellence Program

Our patient advocacy efforts took a leap forward last month with the appointment of Erin VanDyke, PA-C as VP of NBCA’s newly formed Centers of Excellence program. Erin is leading our work in recognizing hospitals and medical centers that show excellence in clinical outcomes, patient education, and post-hospitalization care.

Learn More

SUPPORT OUR MISSION

NEW ITEM: Stop the Clot Backpack!

Spread blood clot awareness wherever you go with this roomy, durable backpack! It features a diagram of the signs and symptoms of blood clots along with our signature polka dots.

Order Your Backpack

YOUR VOICE MATTERS

Tell Us About Yourself!

Please take a moment to answer this quick survey question so we can better serve our community.

Would you participate in an in-person blood clot awareness event in your community?

Yes

Maybe

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News & Updates for the Blood Clot Community

August 2024 | Issue 3

BLOOD CLOT SURVIVORS IN THE NEWS

Survivors Competing in the Olympics and Paralympics

We’re so proud of these survivors — both American and international — who’ve overcome blood clots and and are now competing in the Paris 2024 Olympics and Paralympics. We’ve been tracking the progress of the blood clot survivors who’ve competed so far.

View results

New England Patriots Player Sidelined with Blood Clots

The latest pro athlete to be diagnosed with blood clots is Christian Barmore, defensive lineman for the New England Patriots. Last week, the team announced that Barmore is hospitalized and would be out of the game indefinitely.

UPCOMING EVENT

August PEP Talk: The Role of PCPs in Blood Clot Diagnosis, Treatment and Care

Primary care physicians (PCPs) and specialists such as hematologists both play important roles in the diagnosis, treatment, and management of blood clots, but their roles differ in scope and specificity. Our next PEP Talk on Tuesday, Aug. 13 at 7 p.m. ET will focus on the role of PCPs in the diagnosis, treatment, and long-term care of blood clot patients.

View the Full Event Calendar

NYC: Attend the Black Health Matters Health Summit & Expo on Aug. 15!

RESEARCH

A History of Anxiety and Depression Increases Risk for DVT

The results of a new study published in the American Journal of Hematology shows that anxiety and depression are associated with a heightened risk of DVT.

Learn more

FEATURED RESOURCES

Listen to our Award-Winning Podcast

The latest episode of Taking a Breath features Bonnie Bernstein, blood clot survivor and former sports journalist with ESPN and CBS Sports.

Listen

How to Safely Return to Exercise After a Blood Clot

US News & World Report recently published a must-read article on how to safely return to exercise after a blood clot. It’s packed with expert advice and tips to help you get back on track.

Read it

FACES OF BLOOD CLOTS

Dan

“On July 31, 2021, after being misdiagnosed and sent home almost a week prior, I finally received a diagnosis that would forever change my life: sub-massive pulmonary emboli and pulmonary infarction. I call it ‘the back pain that saved my life.'”

Billie, Kempner, TX

Read her full story

GET SUPPORT

Join our Facebook Support Group

“After a long car trip, I began having pain in my right calf. My doctor ordered an ultrasound that came back negative for DVT. It didn’t get better, so I went to urgent care, where I was diagnosed with DVTs in both legs. The leg pain seemed to improve, but the pain in my right thigh and back worsened. I then found a story in the Stop the Clot Facebook group about May-Thurner Syndrome. I made an appointment with a vascular specialist and I asked if I could be tested for MTS. This was the correct diagnosis. I had a four-hour surgery and woke up feeling like a new person. I am thankful I found this group!”

Join

YOUR VOICE MATTERS

Tell Us About Yourself!

Did your health care provider give you guidance on exercising after your blood clot?

No, I did not receive any guidance on exercise

Yes, I received adequate information on this

Yes, but the information was not adequate

Yes, but I had to initiate the conversation

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News & Updates for the Blood Clot Community

July 2024 | Issue 2

UPCOMING EVENTS

August PEP Talk: The Role of PCPs in Blood Clot Diagnosis, Treatment and Care

View the Full Event Calendar

SUPPORTER SPOTLIGHT

NYC Marathon runner Patrick Mingey of Boston, MA

“My mother and my best friend have both experienced near-fatal blood clots. My best friend and I are honored to be running the NYC Marathon together on Team Stop the Clot. It’s a terrifying condition and I am honored to raise awareness.”

Introducing the NBCA

Advocacy Institute

To put an end to the 100,000 deaths each year to blood clots, we’re accelerating our advocacy efforts by launching the NBCA Advocacy Institute.

Learn more

FACES OF

BLOOD CLOTS

Betsy

“I told the ER doctor I was concerned because of the contraceptive ring, and he told me that he’d never heard of that causing PEs.” – Betsy, Champaign, IL

FEATURED RESOURCES

Watch our July PEP Talk on Compression

In case you missed it, here is the recording of our most recent PEP Talk on compression with Dr. Suman Wasan of UNC Chapel Hill.

Watch

Plan a Blood Clot Awareness Event This Summer!

Awareness of the signs and symptoms of blood clots is unacceptably low among the general public. If you’d like to help change this but don’t know where to start, we have ideas!

Plan an Event

SUPPORT OUR MISSION

NEW ITEM: Stop the Clot Beach Towel!

With summer in full swing, it’s time to spread blood clot awareness when you spread out your towel at the beach or pool! We just added this thick, high-quality towel to our online store.

Order Today

YOUR VOICE MATTERS

Tell Us About Yourself!

Please take a moment to answer this quick survey question so we can better serve our community.

How long ago did you discover NBCA?

Within the past three months

Within the past six months

Within the past year

More than one year ago

More than five years ago

HEALTH TIPS

Forgot Your Blood Thinner While Traveling? Here’s What to Do!

First, contact your usual pharmacy and let them know your situation. They may be able to advance you a refill to your current location, or even transfer your prescription to a new pharmacy.

Or, you can call your doctor’s office. They may be able to send you a new prescription to a local pharmacy.

Also, be sure to stay hydrated and active to help reduce your blood clot risk. Wearing compression can also help improve circulation and blood flow.

Travel Tips

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News & Updates for the Blood Clot Community

June 2024 | Issue 1

Hello Stop The Clot,

Welcome to the first issue of our newly revamped newsletter! Each month, we aim to update you on resources, events, news, advocacy, and much more. As we step into June, we’re spotlighting Men’s Health Month with a special PEP Talk and sharing tips on how to prevent blood clots during summer travel.

UPCOMING EVENTS

VTE & He: Unpacking the Male Blood Clot Experience

Did you know that the overall risk of blood clots is slightly higher in men than in women? Many athletes, such as 2x Super Bowl winner Trey Smith, have had bloods clots. Join our June PEP Talk on Tuesday, June 11 at 7 p.m. ET to learn more and protect yourself and your family.

View the Full Event Calendar

SUPPORTER SPOTLIGHT

Gretchen Piller

“Five years ago, my dearest friend survived a PE, but many others are not as fortunate. I donate to NBCA because I believe in patient advocacy, the strength of community, and the importance of making the STOP CLOT acronym part of our everyday language.”

Heavy Menstrual Bleeding Survey

If you’ve dealt with heavy menstrual bleeding while taking a blood thinner, please help educate the health care community about your experience.

Take the Survey

FACES OF

BLOOD CLOTS

Remembering Taylor

“I’ve done a lot of research and I found that blood clots are often misdiagnosed as pneumonia.” – Taylor’s father

FEATURED RESOURCES

Taking a Breath Podcast

Listen to episode 10 featuring oncologist and blood clot and cancer survivor, Dr. Mark Lewis in “A Conversation on Resilience and Kindness.”

Listen Here

SUPPORT OUR MISSION

Who wants a Stop the Clot® tote bag?

Donate at least $25 in June and receive a Stop the Clot tote bag! Use #GlobeTrotDontClot on social media to show us where the bag travels with you this summer and help spread awareness about blood clots.

Donate