National Blood Clot Alliance
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eNews from NBCA -  March/April 2014
IN THIS ISSUE
A Message from the CEO
Asher's Story
Blood Clots in Children
Help NBCA Spread Awareness with these Tools
NASCAR's Brian Vickers
Apixaban Approved for Knee/Hip Surgery DVT Prevention
Dancing with the Stars' NeNe Leakes
About Thrombophilias
AAHD Launches New Website
NBCA's Most Valuable Volunteers
Walk to Stop the Clot
Team Stop the Clot in the NY Marathon
Johns Hopkins Research Report
Please visit us at www.stoptheclot.org 
A Message from our Chief Executive Officer, Joe Isaacs

 

As NBCA settled into its new home in the Washington DC area in January, our new Public Policy Committee pondered whether or not it was conceivable that NBCA could demonstrate its new presence by hosting a significant event to recognize National Blood Clot Awareness Month in March. It was an ambitious undertaking under any circumstances, but we were determined to succeed. 

 

Swiftly, NBCA staff went into action mode and developed a plan with the Committee's approval.  In two months, we were fortunate to attract the partnership of Rep. Lois Capps (CA-24th), the congressional co-sponsor who created the national awareness month observance in 2009, and secure generous support from the following companies: Daiichi Sankyo, Roche Diagnostics, Alere Anticoagulation Solutions and Janssen Pharmaceuticals.  

 

On March 14, the vision became a reality, as the NBCA proudly held its first ever Blood Clot Awareness luncheon briefing attended by Congressional staff and the public. And with it, NBCA gave notice that it intended to be a prominent voice advocating for public policy that will advance the prevention, early diagnosis and effective treatment of blood clots. Read more about this important event here. 

Asher's Story

Among those presenting at the March 14 awareness month briefing were Jennifer and James DeBouver, recent Army veterans who shared the heart wrenching story of their infant son.  Both parents now work for the Department of Labor.  When Jennifer was 26 weeks pregnant with Asher James, doctors discovered that he had a heart condition called Aortic Stenosis and that a fetal intervention procedure was needed to give him the chance to be born.  Asher's parents were told that even the procedure could prove too much for the fetus to survive, but it was his only chance. Asher survived the surgery, but then blood clots changed everything. Watch their presentation here.

Blood Clots in Children

See our new downloadable "Blood Clots in Children" brochure.  It provides answers to key questions that are important to parents. NBCA is grateful to its author, Dr. Neil Goldenberg of All Children's Hospital Johns Hopkins Medicine, All Children's Research Institute and a member of NBCA's Medical and Scientific Advisory Board.  We welcome you to download these materials and share the information with others. 

You can find the brochure here.

Informational Materials Available from NBCA ...

... to help you raise blood clot awareness! NBCA has an extensive array of educational information about blood clots, in pdf format, that you are welcome to download and share with others to help increase awareness during National Blood Clot Awareness Month and throughout the year. You can find these documents here.

USA Today Weekend Magazine: Cause Celeb

NASCAR driver Brian Vickers was a fit 27 year old competitive race car driver when he suffered not one, but two successive blood clots.  He was in disbelief as it took him out of racing for nearly three years.  While he recovered, he decided to use his NASCAR following to raise blood clot awareness and we are fortunate that he recognizes NBCA and its website, www.stoptheclot.orgas dependable sources of reliable information and a supportive patient community. He recently gave NBCA a terrific "shout out" in the Life section of USA Weekend See the story here.

Apixaban Approved for Preventing Clots after Hip/Knee Surgery

Bristol-Myers Squibb and Pfizer have announced that the U.S. Food and Drug Administration (FDA) approved a supplemental new drug application (sNDA) for Eliquis (apixaban) for the prophylaxis (prevention) of deep vein thrombosis (DVT), which may lead to pulmonary embolism (PE), in patients who have undergone hip or knee replacement surgery.

 

Apixaban had previously been approved for the prevention of blood clot provoked stroke due to atrial fibrillation (AFib). Eliquis (apixaban) now joins Xarelto (rivaroxaban) (made by Janssen) as the two new oral anti-coagulants that have been approved for DVT and PE prevention after hip/knee surgery. Read more here.

'Thankful to be Alive' Blood Clot Survivor NeNe Leakes Competes on Dancing With The Stars

 

 

The Real Housewives of Atlanta star went to the hospital because she was short of breath. Doctors discovered blood clots in her lung, most likely due to her frequent travel.  

 

Read about her experience here.  

Do You Have a Predisposition to Blood Clots?
Have you ever heard of thrombophilias?
Hint:  If you've been told you have factor V Leiden, you carry a thrombophilia.   
Learn more about this, and the various factors that comprise thrombophilias here.
National Disability Navigator Resource Collaborative:
Assisting Americans to Acquire Needed Coverage
NBCA recognizes that the world of health care coverage is changing rapidly with the advent of the Affordable Care Act (ACA).  The American Association of Health and Disability (AAHD) is leading efforts to assist Americans across disabilities/disorders to identify and secure the health insurance coverage they need. These efforts are part of the
National Disability Navigator Resource Collaborative (NDNRC), a program supported by the Robert Woods Johnson Foundation. 
 
Recently, AAHD announced the launch of a website that will help ensure people with disabilities/disorders receive accurate information when selecting and enrolling in insurance through the ACA Marketplaces. You can access the website here.

 

The AAHD has also published the Guide to Disability for Healthcare Insurance Marketplace Navigators, a technical assistance guide for the NDNRC that is designed to provide information about the special considerations people with disabilities face as they shop for healthcare coverage. The guide can be found here.


Fact sheets are available on various topics.  Please click the title to access the fact sheet:

For more information, please feel free to contact Karl Cooper at [email protected] or 

(301) 545-6140 x204.

NBCA's MVVs - Most Valuable Volunteers!

Join us in congratulating this season's Most Valuable Volunteers... making a difference in their home field by raising funds and awareness to Stop The Clot during the Spring 2014 season. NBCA is proud to honor these outstanding volunteers for bringing help and hope to their clotting community and beyond!

 

Maggie Hudson and Zeta Alpha Pi Sorority, Gambier, OH

Trysh Thompson, Georgetown, KY

Vic and Joanna Koziura, Palm Beach Gardens, FL

Paul Zaruba, Columbia MD

Ben and Kara King, and Patti Kelly, Spicewood, TX

Traci Wilkes Smith and the Association of Black Women Attorneys, Brooklyn, NY

Jennifer Brooks, Littleton, CO

                                                                         

Click here to learn more about these events. Are you interested in joining our growing list of MVVs to take action and rally others in the fight against blood clots?   For more information about organizing a special event in your community, please email [email protected].

 

Coming Soon Near You - Walk to Stop the Clot
 
Gambier OH:        April 19, 2014 - Stop the Clot 5K in Memory of Anna Frutiger
Littleton, CO:       April 27, 2014 - 3rd Annual Walk to Stop the Clot Celebrating Jeff McLean
Columbia, MD:     May 17, 2014 - Walk to Stop the Clot Columbia
Spicewood, TX:   May 18, 2014 - 4th Annual Stop the Clot 5K Run/1K Fun Walk
Brooklyn, NY:      June 7, 2014 - 5th Annual ABWA Walk for Blood Clot Awareness
 
For more information on these and other events, please click here.
Team Stop the Clot to Race in the TCS New York City Marathon!

Are you ready to run the world renowned New York City Marathon?  Are you interested in a guaranteed entry, special perks and an opportunity to add meaning to your mileage? We're thrilled to announce that Team Stop the Clot will again participate as an official Charity Partner in the 2014 TCS New York City Marathon on Sunday November 2, 2014. 

Team Stop the Clot runners commit to raise a minimum of $2500 each for the National Blood Clot Alliance and are provided guaranteed entry into this premier New York Road Runners event in return for meeting their fundraising goals. This will be a thrill of a lifetime for you!  You'll use your strength, endurance and the "power of the crowd" through each of the city's five boroughs to cross the finish line in Central Park on behalf of those with or susceptible to blood clots nationwide.  
 

Applications are available here. For more information, please email Judi Elkin at [email protected]

Johns Hopkins Researchers Report that Hospital- Associated VTE Can Be Prevented in Up to 70% of Cases by Improved Systems 

 
 
 
 
CDC's Morbidity and Mortality March 7 Weekly Report published a new NCBDDD article,

Preventing Hospital-Associated Venous Thromboembolism (VTE): A Public Health and Patient Safety Challenge that expands on the CDC Public Health Grand Rounds on this topic that was broadcast on January 16, 2013. 

  

VTE is a major public health problem, with hundreds of thousands of people affected each year. Roughly half of all VTEs are hospital-associated -- that is, they occur during or soon after a hospital stay. Presenters from CDC, the Agency for Healthcare Research and Quality (AHRQ), and the Johns Hopkins University reported that hospital-associated VTE can be prevented in up to 70% of cases by improved systems. Authors include Dr. Michael Streiff, a member of NBCA's Medical and Scientific Advisory Board (MASAB).

 

These findings were highlighted at the 6th Annual Venous Thromboembolism (VTE) Symposium hosted on March 7, 2014 by the Johns Hopkins Hospital Department of Medicine in collaboration with The Armstrong Institute for Patient Safety and Quality. NBCA Most Valuable Volunteer Paul Zaruba participated in the Symposium as a member of the patient discussion panel. Read Paul's story here.

 

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