NATF Advocacy Committee & Initiatives
North American Thrombosis Forum Advocacy Committe Members
(Click advocacy member name to view biography)
Elizabeth Aluck |
Jose Alvarez-Stelling |
David Bock |
Brenda Blackburn |
Kelly Clark |
Julia Foreman |
|
Henry Hagopian III |
Michael J. Hefron |
Ruth B. Morrison, RN, BSN, CVN |
James J. Noble |
Linda A. Picard |
Mark Lindsay |
If you are interested in advocacy opportunities with NATF, please contact Executive Director, Ilene Sussman for further details: 617-823-6756 or isussman@natfonline.org .
Making a Difference: Kelly’s Story
Click here to view Kelly's Story: Deep Vein Thrombosis and Pulmonary Embolism
Making a Difference: Nicole's Story (December 2008 Update)
In April 2008, as I was thinking about my one year survival anniversary, I was taken back to another aspect of my life that was at the forefront of my mind during my thrombosis experience. I am an adoptee. I was adopted at birth, and had never known any medical or personal family history with regards to my biological parents. This April I made the choice to contact the California Department of Public Social Services and request any medical and personal information about my biological parents. I was most concerned with having that information available to my daughter, in hopes that she would be better prepared if any serious medical condition ever arose in her life.
In May I received a package from the Department of Social Services, which included medical histories from both my biological father and mother. It also included my biological mother's personal contact information. Because I had consented to the release of my identifying information, at the same time I got my state package, my biological mother, Stacey, received one as well. She was informed that I had consented for contact, and a week later, I got my first letter from my biological mother.
I immediately sent a letter back to her, telling her about my thrombosis experience and the need to know my medical information for myself as well as my daughter. She had included her phone number in her letter, and I chose to take that step a few nights later and call her. It was an extremely emotional phone call for the both of us, and she learned that she was a grandmother. We agreed to meet two nights later for dinner.
I cannot put into words the anticipation, fear, and years of emotional build up that was involved in that meeting. Among the many questions and answers we both had for each other, I learned that my biological great-grandmother and great aunt had both died of heart disease at very young ages, and that my great uncle, Lyle, and my grandmother, Patricia, had both undergone triple bypass heart surgeries. A year after my grandmother's triple bypass she already again had 100% heart blockage in those arteries. My grandmother takes both aspirin (81 mg) and Plavix daily for the prevention of more clotting. And although they had never been diagnosed with any genetic predisposition for thrombosis, all their doctors had warned the family that they had extremely "sticky blood". I so far was the youngest to experience the effects of it.
Since that first meeting we have continued building a relationship, and are now a normal part of each other's everyday lives. I have met all my maternal biological family and in turn they have learned they have three new family members: myself, my daughter, and my fiancé. My adoptive family was a constant support through the whole process; they understood that after my thrombosis experience it was a part of myself that I needed to connect with. We all became such a part of each other's lives that at my wedding in September I was blessed to truly have my whole family present! It was the best gift I could have ever dreamed of!
Now with my two-year survival anniversary coming up in April 2009, I look back on my original thrombosis experience as my true second chance at life!
Patient Advocacy: Melanie Bloom and The Coalition to Prevent DVT
Melanie Bloom’s husband, David, was an NBC correspondent embedded with the 3rd Infantry Division in Iraq when he suddenly collapsed and died from massive pulmonary embolism (PE). That tragedy was Melanie’s rude awakening to the realities of PE and deep vein thrombosis (DVT), a condition that affects approximately 2,000,000 Americans every year. She, like most Americans, had never heard of the “silent killer” that took her husband’s life.
Inspired by the enormous outpouring of support for her personal loss, Melanie pledged to increase awareness of PE and DVT by working with the Coalition to Prevent DVT, a group of organizations committed to educating the public and healthcare community about DVT. The Coalition’s mission is:
To reduce the immediate and long-term dangers of DVT and PE, which together comprise one of the nation’s leading causes of death. The Coalition will educate the public, healthcare professionals, and policy-makers about risk factors, symptoms, and signs associated with DVT, as well as identify evidence-based measures to prevent morbidity and mortality from DVT and PE.
The Coalition’s website is: www.preventdvt.org.
As the Coalition’s patient advocate, Melanie educates audiences of healthcare professionals, consumers, and members of the media to be alert to the risk factors and symptoms of DVT, which can strike even healthy adults seemingly at random. Common risk factors include restricted mobility, major surgery, cancer, and certain heart or respiratory diseases. Symptoms of DVT include pain, swelling, tenderness, discoloration, or redness of the affected area, and skin that is warm to the touch.
To date, the Coalition’s message has reached millions of people across the country. Melanie has appeared on the Today Show, Access Hollywood, CNN’s American Morning, the Jane Pauley Show, and Larry King Live. She shared her story in the Coalition to Prevent DVT’s public service announcement that continues to air nationally, and she has been featured in both Ladies Home Journal and the 2005 Oscar issue of People magazine. In March 2005, Melanie and the Coalition drew members of Congress, staffers, and members of the media to a Capitol Hill celebration of a Senate Resolution officially declaring March as DVT Awareness Month. Melanie represented the Coalition at major medical meetings for the American College of Chest Physicians (ACCP) and Vascular InterVentional Advances (VIVA), spoke at a DVT lecture series at Jefferson Medical College in Philadelphia, and participated in a film shoot and Web cast for internal distribution at the Hospital Corporation of America (HCA). At every event, Melanie recounts her loss to emphasize the importance of increased awareness of DVT and to encourage the widespread implementation of prophylaxis measures.
Throughout 2006, Melanie will continue working with the Coalition, telling her story and encouraging other patients to share their experiences with DVT. Together with the Coalition, she will help reach policy leaders and a wider audience of healthcare professionals.
Melanie welcomes the opportunity to speak at Brigham and Women’s Hospital and Harvard Medical School and to share her story, as she seeks to raise awareness of DVT. She is especially pleased to be the inaugural speaker of this new Continuing Education course directed by Arthur A. Sasahara, MD: “Proactive Venous Thromboembolism Prophylaxis: Multidisciplinary Prevention of Pulmonary Embolism and Deep Vein Thrombosis.”
Click here to view Melanie's lecture from North American Thrombosis Summit 2007 – September 29, 2007
If you are interested in learning more about advocacy opportunities, such as joining our Advocacy Committee, please click here to contact NATF.