October 2017: World Thrombosis Day
As you can tell from the other articles in this month’s newsletter, World Thrombosis Day is upon us, an opportunity to focus attention on the tremendous medical, personal and economic impact of blood clots around the world. Here at home, we anticipate one million new blood clots each year and 100,000 deaths. Those numbers could creep up as the population ages. I am not even counting the terrible strokes that can result from a clot induced by atrial fibrillation. Regardless of how you put the numbers together, blood clots are a big health problem, one that requires our attention and best efforts to reduce the toll.
Like many of you, I was drawn to the National Blood Clot Alliance as a result of my own clots – bilateral pulmonary embolism. I spent nine years as a volunteer sharing my patient story in an effort to help other people be more aware about blood clots and become engaged patients. Patient and family engagement is important in any medical situation and especially with blood clots, as the acute occurrence can quickly become a chronic condition requiring ongoing care and management.
Since experiencing my clots in 2002, I have been fortunate not to have a repeat episode. The fact that I still take blood thinners and work hard to be adherent to this therapy has certainly contributed to that success. My family has so far avoided serious medical issues, so the experience of patient engagement was becoming an important, but very distant, memory.
All that changed this summer when I was diagnosed with melanoma. Suddenly, the acute patient experience was extremely real and personal. I tried to draw on what I have learned about patient engagement, but it was not easy to apply those lessons. I had forgotten how distracting serious illness can be and how easy it is to be virtually a captive of the healthcare system. I have a renewed appreciation for the challenges people can face when dealing with serious illness or injury.
After a few false starts and bumps in the road, old memories kicked in and I finally felt engaged in this latest medical battle. My family joined in and together we applied true patient-family engagement to the effort. I admit to quickly moving from an “engaged” patient to an “enraged” patient, when I arrived very early one morning for the needed surgery, only to be told it had been cancelled. An engaged family was able to get me settled down and, ultimately, to get the scheduling glitch corrected so that the operation took place as originally planned. I am fortunate to have a very good post-operative prognosis.
While I would not have chosen to get this refresher course in patient engagement, I can at least apply what I re-learned, as well as some new ideas, to my work at NBCA. I hope you can avoid the same scary wakeup call as you continue being very engaged in your own medical journey.
Your experience with patient and family engagement is not only helpful to you, but can be helpful to others facing blood clots. Please join us at NBCA and apply your experience as an engaged patient or family member to help others so together we can finally Stop the Clot®.
— by Randy Fenninger, October 2017
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March 2017: Blood Clot Awareness Month
Each March, the National Blood Clot Alliance (NBCA) and many other organizations celebrate Blood Clot Awareness Month (some groups call it DVT Awareness Month, but the intent is the same—to increase awareness about blood clots). If you have been on our website or social media platforms since March 1, you’ve seen the various activities we have been working on to use this special opportunity to increase public awareness about blood clots, their prevention and treatment.
You might also be curious about how this special month was established and who was originally responsible.
In August 2003, representatives from key health organizations and federal agencies met and decided to establish the Coalition to Prevent DVT (deep vein thrombosis). An important outcome of this meeting was the decision to sponsor DVT Awareness Month, a campaign to bring blood clots into the public eye on a national level. More than 60 organizations joined the Coalition in a united effort to raise awareness and educate others about the importance of this dangerous and very common medical condition. NBCA was an early Coalition member.
To build greater visibility for the issue, the coalition approached Members of Congress seeking their support for this effort. On March 2, 2005, the United States Senate unanimously passed Senate Resolution 56, recognizing March as Deep-Vein Thrombosis Awareness Month. The measure was sponsored by then Senators Arlen Specter (R-PA), Byron Dorgan (D-ND), and Sam Brownback (R-KS).
DVT Awareness Month was also supported in the House of Representatives by Congresswomen Lois Capps (D-CA) and Cathy McMorris Rodgers (R-WA). Rep. Capps’ husband, former Rep. Walter Capps, died from a PE in 2006. Rep. McMorris Rodgers’ dear friend and mentor, former Rep. Jennifer Dunn, passed away suddenly from a PE in 2007.
The efforts by the Coalition to gain the support of these members of Congress is commonly referred to as “advocacy,” in this case advocacy about improving health outcomes by stressing the importance of building public awareness about blood clots.
NBCA continues to advocate for improved health to this day. In 2008, we joined many organizations to work with the U.S. Surgeon General to establish a national “Call to Action” about blood clots, highlighting the importance of this issue for the American people. NBCA was very involved in a successful effort to expand Medicare coverage for home testing of INR for patients on warfarin. Working with partners, we have supported increased federal funding for blood clot research at the National Institutes of Health (NIH) and for an enhanced public health program conducted by the Centers for Disease Control and Prevention (CDC). We were very active in the effort to persuade the federal government to include blood clots as an important issue for Healthy People 2020, which is the health improvement plan adopted by all federal agencies.
NBCA will continue to play a role advocating that the Federal government take on a larger role in the battle to reduce the disability and death caused by blood clots, by increasing research funding at NIH and expanding the public health programs at CDC. We will work with like-minded partners to carry these messages to Congress and the Administration.
Perhaps most important are the messages that blood clot survivors, families who have lost a loved one to clots, and their friends carry to the federal government. Your experience counts a great deal in the ongoing effort to work with the government to reduce the health burden of blood clots. Don’t be a member of the “silent majority,” but join the “noisy minority” and tell your story to elected officials and leaders of federal health agencies. Your voice can make a real difference as we all work to Stop the Clot®.
— by Randy Fenninger, March 2017
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December 2016: Happy Holidays and Happy New Year
We are in the midst of the holiday season, celebrated by people in rich and diverse ways that reflect the many strands making up the national fabric of the United States. Regardless of how you honor this special time, all of us at the National Blood Clot Alliance (NBCA) wish you a joyous holiday season and a healthy and happy 2017.
As NBCA closes out its thirteenth year of operation, I want to express special thanks to our founding members who first recognized the need for an organization focused on helping the public, patients, families and caregivers know more about blood clots, their diagnosis, prevention and treatment. Of course, their original efforts would not have been sustained without the hard work of many more volunteers across the United States since those early days in 2003. They have given time, treasure and often both to keep our vision and mission alive. We owe them a continuing debt of gratitude. We have also been blessed with talented volunteer leadership–our Board of Directors, Officers and committee members. NBCA has been fortunate to have the finest physicians, scientists, nurses, pharmacists and other health professionals contribute their time and talent to our Medical and Scientific Advisory Board (MASAB). They keep our message true to the science of thrombosis and hemostasis. Thank you to all who give so generously of their time and talent.
As CEO I want to extend my special thanks to the NBCA staff who are tireless in their efforts to advance our work to “Stop the Clot®.” A more talented and dedicated group cannot be found, and I am honored every day to be able to work with them.
NBCA succeeds because of the combined efforts of many people and if you are not already among that number, I extend my personal invitation to join with those already actively engaged in NBCA’s cause.
Many thanks also go to our partners in government and industry who support our work. Blood clots are a major health problem in this country and these partners play an important role in combatting it.
A special message of appreciation goes out to our colleagues at the Centers for Disease Control and Prevention (CDC). CDC staff helped our founding members get started and the agency has remained an important ally in our collaborative work. If you want a great example of your tax dollars at work, just take a look at what this agency does, not only in the blood clot arena, but across the international public health spectrum. Their work is awe inspiring.
In my many years as a blood clot survivor, lifetime anticoagulation patient, NBCA volunteer and staff member, I have been struck by how much we know about diagnosis, prevention and treatment of clots. My chief frustration is that this knowledge is not always used and applied in daily medical and hospital care. We know that many clots can be prevented, using well known tools. That’s the good news. The bad news is our failure to do what is right and the human suffering that results. Let’s resolve to apply what we know even more effectively in 2017 and beyond.
However, I have also learned how much mystery still remains about blood clots, their mechanisms and the susceptibility of certain people to clots. For example, we know that the genetic condition called Factor V Leiden is an important risk factor for clots, but we also know that many people with that genetic mark will never experience a clot. How can we learn to predict more accurately who is really at risk and who is not? There are hundreds of other questions and conundrums like this one.
I believe the answers to these questions will be found through improved biomedical research, and I am pleased to announce that in 2017 NBCA will take its first steps to support the scientific research enterprise. Research has always been one of our objectives and we are ready to endorse an increase in research support that will lead us to our vision in which the number of people suffering and dying from blood clots in the United States is reduced significantly.
We are fortunate to have a partnership with the Thrombosis and Hemostasis Societies of North America (THSNA) that offers the opportunity for NBCA to create a named scientific research grant to support the efforts of young investigators to create new knowledge that will ultimately advance patient care. THSNA already provides financial support for clinical and basic science research projects in hemostasis and thrombosis and will be an important ally as we move forward. The research program engages top scientists in a disciplined search for new and lasting answers.
We will launch this effort on Thursday, January 26, 2017, at a fundraising dinner hosted by active volunteers Phil Kean and Brad Grosberg at The New American Home 2017 in Lake Nona, Florida. Jack Ansell, MD, former chair of NBCA’s Medical and Scientific Advisory Board and a Professor of Medicine at Hofstra-NorthShore/LIJ School of Medicine will lead the discussion of the research needs and opportunities.
If you’d like to learn more about our research program or the January 26 dinner, please email me at email@example.com.
Thank you for your interest in, and support for, our work. Happy Holidays and Happy New Year.
— by Randy Fenninger, December 2016
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August 2016: Stop the Clot, Spread the Word™ Phase II
Among the many positives about my job is the pleasure of seeing the launch of a new project or the posting of new materials on our website and social media outlets. So I am very excited about the information on blood clot safety and hospitalization we have just added to our Stop the Clot, Spread the Word™ public awareness campaign. It is an unfortunate truth that being admitted to the hospital can increase your risk for blood clots, but as this material demonstrates, there are a lot of things we can do to minimize the risks. I encourage everyone to read the information carefully and pass it along to family and friends, especially if an inpatient hospital stay is just around the corner for them.
This new phase of our public awareness campaign is part of our ongoing work with the Centers for Disease Control and Prevention (CDC). CDC is the pre-eminent public health agency in the world and NBCA is honored to be one of their partners. CDC understands the importance of public awareness and education on any important health issue and blood clots are no exception. NBCA greatly values its partnership with the agency, so a “tip of the hat” goes to our friends in CDC’s Division of Blood Disorders with whom we work very closely. Thanks also go to CDC staff in other divisions at their Atlanta headquarters who have played an important role in the success of our cooperative work with the agency.
Of course, we work with CDC, and that means that someone at NBCA is hustling to make sure we hold up our end of the bargain. In that respect, kudos go to our communications folks – Lisa Fullam and Sara Wyen. Lisa, NBCA’s Director of Communications & Health Marketing, manages the day-to-day details of our CDC activity. She is effectively assisted by Sara, our Manager of Communications & Health Marketing, who is also hard at work on our social media projects. Congratulations to Lisa and Sara for this latest public awareness effort.
All of us can get involved in this exciting launch by sharing this information with our friends, family, and social media networks. Take advantage of your tax dollars at work and study this new material on blood clots and hospitalization and then share it with everyone you know. You could save a life, maybe even your own.
— by Randy Fenninger, August 2016
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March 2016: Blood Clot Awareness Month
— by Randy Fenninger, August 2016
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All of us at NBCA wish you a wonderful holiday season, filled with joy and love, and the Happiest of New Years.
The end of the year offers a chance for reflection on the months that have passed, an opportunity to resolve to do better in the next year, and many reasons to celebrate with family and friends.
At NBCA we look back at 2015 with pride in new achievements but with a recognition that more must still be done to reduce the death (at least 100,000 every year) and disability that blood clots cause in the United States. We resolve to do more and do better in 2016 and hope that you will join with us in that effort.
One important way we can do better together is for you to participate in our 274 Campaign, so named because that is how many people die each day in this country from a blood clot. To those who have already contributed, thank you very much. If you are still on the fence, please consider how much good your donation can achieve by supporting and expanding our efforts to Stop the Clot®. Your generosity strengthens our programs of public awareness and patient education, and helps us encourage those who need support as they recover from their own experience with blood clots.
Please go to our website at www.stoptheclot.org. On the homepage, just click on “Donate Now” and you will land on our 274 campaign site. A few clicks and you can make a real difference. Thank you in advance for caring enough to help.
As I looked back over this year, I concluded that one of the real pleasures in working at NBCA has been the chance to talk with people from all over the country who want to share their stories, ask how they can help and get more information about blood clots. Each conversation is unique and a reminder of the importance of what NBCA does every day.
Many callers express confusion over medication to treat blood clots. Thanks to advances in medical science, new drugs are available and therapeutic improvements are announced frequently. However, choice can sometimes bring confusion. People wonder if they are on the right medication or should make a change or even stop taking the prescribed therapy. Since I am not medically trained, I can’t respond to these concerns and the fears that some patients have. The one person best able to answer these questions is your physician, and I hope you won’t make a change in your medication without talking to your doctor first. At NBCA we try to help you ask your physician the right questions, so your joint decisions on medications are informed and you are engaged actively in your own care. But talk with your physician first, before making any treatment change that could have important health consequences for you and consequences for your family and friends. That’s the best way to be an engaged patient and truly take charge of your medical care.
I want to close on a personal note and thank the wonderful NBCA staff, Judi, Lisa, Sara and Caitlin, for all of their hard work this past year. You make every day a good one. Let me also thank a supportive Board of Directors, providing the leadership so critical to our success. And, of course, there are the many people around the country who volunteer to Stop the Clot® who can never get enough thanks for their leadership in their communities.
— by Randy Fenninger, December 2015
Click here to learn more about blood clot risks
October 2015, World Thrombosis Day
The National Blood Clot Alliance (NBCA) is proud to join more than 300 international organizations in celebrating World Thrombosis Day on October 13. NBCA, the largest patient advocacy organization in North America focused on blood clot issues, is working with the international community on this special day to promote public awareness about blood clots and provide educational information to millions of people worldwide.
As CEO of NBCA I tip my hat to my international colleagues for their efforts around this annual event and for all the hard work they do every day to promote our shared mission to Stop the Clot®. It is an honor to be associated with so many dedicated people striving to reduce the death and disability caused by blood clots around the world. Special thanks go to the International Society on Thrombosis and Haemostasis for their leadership in energizing the world thrombosis community around this special day in order to call attention to this major public health problem.
Celebrating World Thrombosis Day reminds each of us that blood clots affect us all, of every age, race, gender and ethnic group. Blood clots respect no boundaries or borders. They truly are an international problem, one that can be successfully addressed by nations cooperating with each other through their representative patient advocacy groups and medical societies. Each World Thrombosis Day advances the opportunities for that cooperation and brings the international community one step closer to finding answers that will benefit us all.
— by Randy Fenninger, October 2015
September 2015, Atrial Fibrillation Awareness Month
September is Atrial Fibrillation Awareness Month and organizations across the country, including the National Blood Clot Alliance (NBCA), have been promoting awareness in many special ways, to stimulate public understanding of Afib, one of the major risks for stroke. NBCA is proud to be collaborating with all of the groups trying to turn the tables on Afib.
Afib now affects nearly 3 million people in this country. It is a cardiovascular condition that upsets the normal rhythm of the heart, by interfering with the electrical signals that control heart beats. This causes the upper chambers of your heart, called the atria, to beat chaotically, restricting blood from being efficiently pumped from your heart. When your heart can’t pump out blood effectively, the blood can sometimes pool in your heart and form a blood clot. This is a serious condition and can lead to strokes. People with Afib have a much higher stroke risk than those who do not have this heart condition.
Although we at NBCA don’t claim to know much about the electrical impulses that make hearts beat properly, we do know blood clots, and therein lies our concern with Afib and the blood clot risk that accompanies the condition. We know that proper management of Afib induced clot risks through the use of anticoagulant therapies can go a long way to reduce the strokes these clots might cause. Regardless of the reason someone is at risk for a blood clot, NBCA wants to reach out, educate and help. For those of you that have not checked out our material on Afib, go to https://www.stoptheclot.org/afib-2.htm and take a look.
Even if you don’t have Afib, it’s very likely you know someone who does. The condition generally affects older people and with an aging population, experts predicts that by 2050, more than 12 million Americans will have this condition, barring some medical miracle between now and then. Since clot induced stroke is such a big risk with Afib, it’s one more reason for everyone to be informed about the signs and symptoms of clots, and in the case of Afib, the signs and symptoms of stroke.
The Centers for Disease Control and Prevention has some excellent information on stroke, along with links to other good resources, at http://www.cdc.gov/dhdsp/data_statistics/fact_sheets/fs_stroke.htm. Take a few minutes to educate yourself on stroke, especially clot induced stroke. Get informed and save a life.
It is very important to focus on important public health issues and increase awareness about them. That’s why we celebrate Atrial Fibrillation Awareness Month in September, World Thrombosis Day in October, and National DVT Awareness Month every March. The impact of these events is important to improved health. So is the daily work to Stop the Clot®, done here at NBCA and by countless volunteers around the country essential to reducing the death and disability caused every day by blood clots, regardless of their cause.
Join our efforts to stop all clots, no matter how they get started. The life you save may be your own.
— by Randy Fenninger, September 2015
July 2015, NBCA Welcomes New Volunteer Leadership, CEO THINK & INK, BY RANDY FENNINGER, NBCA CEO
The National Blood Clot Alliance (NBCA) held annual elections in June, and I congratulate and welcome the new officers and directors who were selected. Our new President, Sara Wassenaar, hails from Alma, MI. Eric O’Connor, newly elected Vice-President, lives in Wheaton, IL. The new Secretary, Kay Holcombe, comes from Gaithersburg, MD. Our Treasurer, Teresa Bordeaux, is from Cary, NC. New members of the Board of Directors, Caryl Mahoney, Justin Barch and Steve Rodner, are based in New York, Maryland and New Jersey, respectively. Traci Wilkes Smith, also of New York, was re-elected to another term as a member of the Board of Directors.
Thanks to all of you for your commitment to NBCA and its mission to reduce death and disability caused by blood clots. The entire NBCA staff looks forward to working with you and supporting your volunteer efforts.
I list the hometowns and states of these NBCA volunteers not to teach a lesson in US geography, but to demonstrate the geographic diversity of our leadership. To me, this is an important sign that NBCA’s efforts to get its message out across the country are working. All of the newly elected officers and directors, as well all of the other Board members, come to NBCA leadership either through their own volunteer participation at the local level or through connections with people who are already active and who encourage the participation of friends and neighbors. Ten states are represented on the Board and volunteer events occur in many more.
Congratulations and thanks go to the outgoing leadership: Kathy Smith, President and Shawna Russo, Secretary. Even though they no longer serve in their previous leadership posts, they will remain on the Board of Directors so NBCA will continue to have the benefit of their experience.
As a former NBCA volunteer, I know how hard officers and directors work to help the organization succeed. The NBCA staff will do its part to share those burdens and work closely with the leadership and other volunteers to Stop the Clot.
Voluntary health organizations, like NBCA, depend on the participation and leadership of many volunteers throughout the country. Volunteers bring passion and energy to their tasks, and we could not succeed without their generosity of time, talent and treasure. Our recent elections reflect those volunteers who have reached the top of the NBCA pyramid, but it is the broad base of support across the country that is the foundation of the organization.
I invite anyone with an interest in the work of NBCA to become a volunteer. We welcome your talent, ideas and energy. Send me an email at firstname.lastname@example.org and I will make sure to direct your request to the right committee chair or staff person. We will get back to you promptly and together determine the best way for you to participate. Alternatively, go to our website www.stoptheclot.org and click on “Get Involved”. You will find information on the many ways you can help.
NBCA elections open another new chapter in our history, one that volunteer leaders, old and new, help to write. I look forward to playing a part in that effort, as does the entire NBCA staff. Together we welcome the incoming leadership and thank those that are stepping into other roles. NBCA could not succeed without all of you.
— by Randy Fenninger, July 2015
March 2015, CEO THINK & INK, BY RANDY FENNINGER, NBCA CEO
March is national Deep-Vein Thrombosis (DVT) Awareness Month, an annual public health initiative aimed at raising public awareness of this commonly occurring medical condition and its potentially fatal complication, pulmonary embolism (PE), blood clots in the lungs. Every year at this time, the National Blood Clot Alliance (NBCA) joins with other organizations to focus public attention on DVT and PE. This March was particularly significant for NBCA as we launched a new public awareness campaign with the Centers for Disease Control and Prevention (CDC) designed to help people better understand the signs and symptoms of blood clots and their own personal risk factors.
This new campaign — called Stop the Clot, Spread the Word™ — builds on NBCA’s experience with public and private education and expands our reach using the latest digital messaging tools. It’s our most sophisticated public health campaign to date, and I congratulate the NBCA volunteers and staff who have made it possible, and we all thank the CDC for its enthusiastic support.
However, we know that one month a year simply is not enough to break the cycle of death and disability caused by blood clots. Even though the majority of clots can be prevented using the tools we have available today, we are not seeing the kinds of results that we all strive for. The stark reality is that every day, on average, 274 people die from blood clots. It’s a stubborn number that seems resistant to efforts to shrink it. For too many of the 274 individuals, the first symptom of a blood clot they will have is sudden death. That’s why our effort, and the work of others, to make people more aware of the signs and symptoms of blood clots and their own risk is so important and must go on every day of every month, not just in March.
NBCA applauds the annual national effort to focus attention on this important public health issue, but we know that the visibility gained through those activities will be lost unless the message goes out all the time, every day, all year long. Thus our new program, “Stop the Clot: Spread the Word” will be a long term activity. We took advantage of the visibility of DVT Awareness Month to launch our effort, but anyone seeking information about the signs and symptoms of blood clots and their own personal risk will be able to do so every day, whether it’s in March, June, September or December. And we will continue these kinds of programs until blood clots are a rarity, not a common, everyday occurrence. That is our vision and our mission.
Describing the mission and vision of any organization can sound important, but lack the human touch. We all need to be grounded in the reality of what we do, to hear from people who have been helped by our work. Our website is filled with patient stories and we add more all the time. That is a very popular part of the website. I think that’s because it lets people know that they are not alone, that others have shared their experience and that for most people, recovery is their reality.
Not long ago, I received a letter from a high school girl who had suffered major PE, with no apparent cause. She wrote to tell us of her experience and to express her appreciation for the work of NBCA. She closed her letter with these words, “…I want to thank you for your efforts in situations like this. Your efforts will save many lives in the future, and improve the treatments of people who have had blood clots and survived. Thank you for all that you do. I hope that you continue to enhance lives as you move forward.”
In closing, I want to assure this young woman that NBCA will most certainly continue to move forward, and I would like to invite everyone reading this article to join NBCA in its work “to enhance lives”. Simply click on the “Get Involved” link on our home page. Sign up so that you, too, “can save many lives in the future” and thank you for all that you do.
— by Randy Fenninger, March 2015