If you ever had doubts about a particular social movement or participating in an activity that a group was putting together, and weren't sure about their effectiveness, if they really ever actually achieved their goals or even got to doing anything, your doubts would be eliminated if you take a look at what the COPD community did throughout this past November, COPD Awareness Month.
Crawling on the Web
Theres no doubt that the era we live in is almost entirely dependant upon the information disseminated through the Internet. What could be the strongest form of communication for individuals living today, the Internet is a place where folks can keep in touch with others, find the information they need, and use it as a venue to express themselvesall from the convenience of wherever they are. The Internet is no longer tied to a desktop computer. The development of wireless Internet, laptops and smart phones now let you take your access to the world everywhere you go. And the Internets not just for the younger generation anymore; folks from all ages and backgrounds have their network online.
COPDers have sought the Internet as a bank of information and support, as well as an outlet to express their thoughts, concerns and feelings about the challenges they are facing. On Facebook, the COPD Foundations cause page had approximately 2,000 members this past Novembermaking it the largest COPD-related cause on Facebook! Members of the cause page urged their friends to join and donate their status updates to post awareness messages. This amplified awareness on Facebook in a pay-it-forward-type model.
Picture this: Mary posts a message on her page that says, "COPD is the 4th leading cause of death but over 12 million Americans dont know they have it. Help spread awareness now!" If Mary has 100 friends and all of her friends saw her message, she just spread awareness to 100 people in just one click. And if Tim, one of Marys friends, decides to help the cause by reposting her message as his own, he just spread awareness to all of his friends.
Almost everyday throughout the month, the Foundations Twitter page sent out messages to its followers with COPD facts, updates and message points for users to repost, or "retweet," on their pages. The Foundations cause page sent out messages to its members about advocacy activities, ideas for spreading awareness, some message points about COPD, and news updates on program launches.
This campaign gave members in the online community the chance to do their part in spreading awareness in such an easy, but effective, way.
"I believe in spreading the awareness online and in the real world," says cause member and COPD advocate Katherine Ruth Vann. "I asked my Facebook friends and other friends to sign the Stop COPD Petition! I am a patient and I just lost my mother in July from COPD. Our area really needs support."
The Squeaky Wheel Gets the Grease
Advocacy was the overarching theme throughout November. Communities around the nation took the chance during awareness month to spread the word to their public officials. Under the umbrella of the Operation 435 program, these advocates were able to come together with a plan at hand and send out unified message points to their officials, helping make their voices stronger and unified in the ears of these policy makers.
Operation 435 is a grassroots advocacy program driven by the individuals affected by COPD. COPDers, their families, friends, and doctors can become advocates for COPD issues.
Operation 435 advocates sent thousands of letters to their governors and congressmen informing them about the issues concerning the COPD community and urging them to support the various legislations and activities. But one of the most critical message points were sent to their states Behavioral Risk Factor Surveillance System (BRFSS) Coordinators.
The BRFSS is a state-based system of health surveys that collects information on health risk behaviors, preventive health practices, and health care access primarily related to chronic disease and injury. For many states, the BRFSS is the only available source of timely, accurate data on health-related behaviors.
Advocates saw that it was important to write to their states BRFSS coordinators and ask them to include a COPD Modulea set of questions set out to measure the burden of COPD. In other words, the questions will help indicate how many people have been diagnosed with COPD in the state, how prominent hospitalizations are due to exacerbations, and the effect COPD has on their quality of life.
North Carolina was the "model" state that created and implemented a set of core COPD questions that both the Centers for Disease Control (CDC) and National Heart, Lung and Blood Institute (NHLBI) encouraged remaining states to implement this set of questions in their survey.
"I joined Op435 to be a voice," says advocate Jane Ferris. "I am only 54 years old and as long as I have breath I will continue to raise awareness and be apart of Operation 435." She sends a message to other COPDers. "I would tell other COPDers [to] please volunteer your time. Its our right to breathe and our right to end this disease." Advocates continued to send messages to their coordinators and other public officials into the New Year. Throughout 2010, the 435 advocates will be contacting their public officials about the BRFSS among other issues.
Fundraising for a Good Cause
A few weeks before the end of the year, the COPD Foundation hosted its second annual fundraising event in New York City. The cocktail reception honored Dr. Mehmet Oz, Vice-Chair and Professor of Surgery at Columbia University for his contributions to health care awareness and quality.
Dr. Oz directs the Cardiovascular Institute and Complementary Medicine Program at New York Presbyterian Hospital. In addition, he hosts the daily syndicated talk show, The Dr. Oz Show, which debuted this past fall. Dr. Oz also hosts a daily talk show on Sirius XM Radios Oprah Radio and was the medical expert on The Oprah Winfrey Show for five years.
The event space, MPE Penthouse, was generously donated by the Motion Picture Enterprise in New York City. Guests were entertained with carols sung by Sing We Enchanted and pianist Mark Oleszko.
The fundraiser was a success for the COPD community! Over $350,000 was raised that evening with the sale of auction items and other donations. All the proceeds from the event will go towards supporting the Foundations various awareness programs.
Guests learned more about the Foundations activities and the needs of the community, including more support for research, better awareness among health care professionals, and the need to find the undiagnosed individuals living in the U.S. that are currently not receiving proper treatment.
Among the guests was last years honoree Grace Anne Dorney Koppel, spokeswoman for the COPD: Learn More Breathe Better campaign, accompanied by her husband and news anchor Ted Koppel.
It is the Foundations hope that this fundraiser continues to take place every year, helping to increase awareness and funds that will support the efforts being made by the COPD community.
The COPD Foundation would like to extend a special thanks to the evenings supporters:
Patron Sponsors: Boehringer-Ingelheim Pharmaceuticals, Cerberus Capital Management, and Talecris Biotherapeutics
Benefactors: Benefactors were Ampersand Ventures, Centric Health Resources, Covidien Patient Monitoring Solutions, Digitas Health, Goldman Sachs, Med Knowledge Group, Morgan Stanley, Reed Smith LLP, Womble Carlyle, and Sandridge & Rice PLLC.
Friends were AlphaNet, Barclays Capital, Citigroup, MTS Health Partners, ndd Medical Technologies, Pilzer Family Foundation, Wells Fargo Securities, and the Thomashow and Walsh families.
The Foundation would also like to extend their thanks to those who graciously donated the auction items: Aureole New York, Arthur and Sarah Chabon, Danielle Dimston, Dr. and Mrs. Stephen Freifeld, Kay Gardnier, Jean Georges Restaurant, Robert and Elaine LeBuhn, New Jersey Nets, New York Theatre Ballet, Dr. Mehmet Oz, Charles and Susan Silverman, Thalassa Restaurant, and John and Diane Walsh.
Several exciting news announcements were made to the community in November. From the launches of new programs to the release of critical research, there was always something to keep the spectators on the edge of their seats. The COPD Uncovered Report released its results on World COPD Day. The report revealed that a younger group of individuals with COPD has emerged. Collaborating with other organizations worldwide helped bring the findings of this report to policymakers. The fact that COPD is affecting the wage earning population (ages 40-65) correlates to the loss of work missed per week (sometimes up to ten hours). This groundbreaking report serves as a call-to-action for all members of the community to address this global burden.
In Florida, the Everblades hockey team hosted a "COPD Awareness Night" along with the Florida COPD Coalition and Southwest Florida COPD Advocate Team. At the event, the 6,000 attendees learned how to recognize COPD symptoms and the resources their community has to offer. It was a successful event, the first of its kind for the Coalition and Advocate Team.
Year of the Lung, 2010
All the activities this past fall have only invigorated the community to continue throughout 2010. Designated as the Year of the Lung by patient organizations and medical professional societies worldwide, 2010 offers new hopes and opportunities for the community to leave their mark in this world, in effort to improve the lives of all those affected by COPD.
COPDers worldwide took action this past season, made a difference, and realized that they are the legs of the movement that will bring about the changes needed for all those affected by this disease. Without advocates demanding their voices be heard, the community wont move faster toward finding a cure.
Without participating in research (such as enrolling in the COPD Research Registry), or writing to policymakers and signing petitions (like those who helped in Operation 435s last campaign), or signing up to help offer resources to those who dont have it (as every C.O.P.D. Information Line associate does), the movement has no legs.