Volume 3, Issue 1
Q;uarter 1 2009
 

Campaign Update

COPD Learn More Breathe Better® is now trademarked!

COPD Learn More Breathe Better® is now a registered trademark of the U.S. Department of Health and Human Services.  While this news does not affect the use of campaign resources—we continue to encourage you to use the materials and distribute them to a variety of audiences—organizations that wish to use the COPD Learn More Breathe Better® name or logo are required to follow usage policy guidelines.  Learn more about the new usage policies.

 

Something New for 2009—The E-Newsletter is Going Quarterly

The new year kicks off with a new distribution schedule for this e-newsletter—the COPD Learn More Breathe Better® Update will now be distributed quarterly.  This will give us a greater opportunity to hear from more of you, our campaign friends and partners, and to provide more thorough coverage of outreach activities and awareness events.

We will continue to deliver timely, relevant, ‘news you can use’ about the campaign and related efforts to raise awareness of COPD.  Let us know more about what you and your organization are doing to help Americans learn more and breathe better so we can include it in future e-newsletters!

COPD in the News

Image of Everything Respiratory, Fall 2008 magazine coverEverything Respiratory, Fall 2008

Everything Respiratory, a consumer magazine dedicated to educating readers about various lung conditions, featured Grace Anne Dorney Koppel in the fall 2008 issue.  The two page article highlighted Dorney Koppel’s experience living with COPD, her role as a COPD Learn More Breathe Better® patient advocate and her thoughts about how doctors and patients can better educate themselves about COPD.

American Medical News, December 15, 2008

Results of the HealthyStyles survey data reporting on the public’s overall awareness of COPD were featured in the December 15 edition of American Medical News, the print and online news publication for physicians published by the American Medical Association.  The article points to the fact that, while awareness of COPD is on the rise, few patients understand the risk factors, symptoms and available treatments.  The article also mentions the COPD Learn More Breathe Better® campaign and quotes Elizabeth G. Nabel, M.D., NHLBI director, and Gail Weinmann, M.D., deputy director of NHLBI’s Division of Lung Diseases.

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Partners In Motion

Local Healthcare Workers Union Collaborates with COPD Foundation to Host COPD and Lung Health Program

This past November in New York, the COPD Foundation and Service Employees International Union United Healthcare Workers East—the largest Local union in the world—presented two half-day multidisciplinary programs on COPD.  The event drew more than 1,000 participants—both in-person and via the Web—including nurses, dieticians, respiratory therapists, pharmacists and technicians, physician assistants, clinical lab practitioners and social workers to hear presentations on a wide range of COPD-related topics, from the role of spirometry, to the worldwide impact of COPD, environmental factors, therapies and an overview of the economic burden of COPD.  In addition, an exhibit area featured information on smoking cessation and nutrition, as well as demonstrations of spirometry and pulmonary rehabilitation.

James P. Kiley, Ph.D., director of NHLBI’s Division of Lung Diseases, was a presenter at the event and COPD Learn More Breathe Better® fact sheets were distributed to attendees.  A number of healthcare practitioners received continuing education credit for attending the program.

COPD-Alert’s Vlady Rozenbaum Shares COPD Patient’s Perspective with International Journal on Disease Management

Vlady Rozenbaum, Ph.D., COPD patient and founder of COPD-Alert, an international online patient support and advocacy group, shared his personal perspectives while shining a bright light on COPD in a recent issue of Disease Management and Health Outcomes, an international peer-reviewed journal focusing on all aspects of disease management.  According to Rozenbaum, the article, titled “Patients With Chronic Obstructive Pulmonary Disease: Between Reality and Expectations—A Patient’s Perspective,” details from his perspective “why COPD is stigmatized, under-recognized, under-treated and under-funded.”  The article addresses important issues pertaining to diagnosis and management of COPD, including ambulatory oxygen, pharmacological treatments, pulmonary rehabilitation programs and the role of physician input.  In addition, the article recognizes the COPD Learn More Breathe Better® campaign and calls for COPD to become a leading health priority.

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Spotlight On…Edna Fiore, Patient Advocate

Photo of Edna Fiore
Photo by Jessica Bradshaw

Edna Fiore first noticed she was becoming short of breath back in 1997 after moving from Newport, Oregon to Aspen Park, Colorado.  A history of asthma, repeated bouts of pneumonia and smoking, along with shortness of breath on exertion and the other symptoms she was experiencing, led to her COPD diagnosis.  Since then, Fiore, a retired medical technologist, clinical laboratory scientist and journalist, has been active as a patient advocate, utilizing her varied professional expertise to help spread the word about COPD across her home state and the nation at large.

“Throughout my adult life, I have found fulfillment and satisfaction by serving others,” says Fiore.  “I don't consider having COPD an insurmountable burden.  Rather, it is a challenge I face every day that gives me an opportunity to utilize my understanding of and experience with COPD to help others learn how to manage the disease and live life to the fullest.”

In addition to the many national COPD-related organizations and committees with which she is involved, Fiore is actively engaged in grassroots efforts throughout Colorado, reaching patients and health professionals directly.  She attends COPD support group meetings and community awareness events where she shares her story and distributes educational materials about identifying and managing COPD.  She served on the Advisory Committee for the Colorado COPD Coalition, the first state COPD Coalition in the country.  Fiore also travels extensively, making presentations at various meetings and conferences to provide a patient’s perspective on COPD.

“The participation of patients at the local, state and national level is important,” says Fiore.  “It is the only way we will succeed in promoting awareness, educating patients, caregivers and health professionals, increasing funding for research and early detection.”

In addition to her grassroots outreach, Fiore serves as a board member of EFFORTS (Emphysema Foundation For Our Right To Survive), a member of the US COPD Coalition and the Colorado COPD Connection and serves as an American Lung Association of Colorado Community Liaison and a COPD Foundation Call Center Associate.  As a COPD Foundation Call Center associate, Fiore answers callers’ questions and provides them with important information, such as where they can find pulmonary rehabilitation programs and support groups.

While not everyone can be as involved as Fiore, she wants other patients to know that even small contributions have a large impact.  “Many patients don’t realize that even small things, like joining research studies and attending Better Breathers Clubs, make a huge difference,” she said.  “In order to shine a light on COPD, it’s extremely important for patients to get involved in education and awareness initiatives.”

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COPD Learn More Breathe Better® is a trademark of DHHS.

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