Posts Tagged Community

The COPD Foundation Blog Has a NEW Home!

May 1st, 2015 | Author: Katelyn Turner

As you probably know, the COPD Foundation launched the COPD360social.org networking platform in November 2014. The site is an invaluable resource by serving as a one-stop-shop for COPD: access quality educational materials, participate in research, become an advocate, and connect with new friends. It allows us to meet, chat, collaborate and support one another- and now you can read the Faces of COPD blog posts on COPD360social.org! We want to hear from patients, caregivers, and professionals daily.  Your thoughts, concerns, fears, and inspiration- become a part of our interactive, collaborative community to friends, learn about events in your area,COPD360ourcommunityonline_AAcard chat with the experts, and learn how to take action- all on your time, at your pace. At COPD360social you can:

  • Create a personal profile describing yourself
  • Get to know others with COPD
  • Ask a question
  • Start a discussion
  • Share your story
  • Comment on a blog
  • Access educational materials
  • Find out about COPD events in your area and across the country
  • Find a pulmonary rehabilitation program near you
  • Find a breathing support group near you
  • Make a difference through research
  • Have a voice in policies and laws
  • Be inspired!

There is a lot of information on the internet. Sometimes it can be pretty overwhelming. It can be hard to know what’s true and what’s not, and which are proven treatments and those that don’t have scientific support. With COPD360social you can be confident you are getting quality information from a trusted source. Join COPD360social, because we are stronger when we work together. Visit www.COPD360social.org to create your profile and access future COPD Foundation blog entries.

The COPD Foundation Thanks You

November 27th, 2014 | Author: Katelyn Turner

This Thanksgiving, the COPD Foundation would like to express its gratitude to you, our advocates, for all of your time and effort on spreading awareness of COPD. Your passion and dedication is inspiring and we appreciate all of your hard work over the years.

As 2014 comes to a close, we look forward to the latter part of our 10th Anniversary. We began our journey in May pinwheel thanks2004, with a small team of individuals who were committed to bringing effective change to a widely misunderstood, ignored, and stigmatized disease-state. We formed the Foundation with the goal of preventing and curing chronic obstructive pulmonary disease, and to improve the lives of all people affected by this devastating disease.

2014 was a transformational year for the COPD Foundation and a time of many firsts for the international COPD community.

We look forward to seeing these research, educational, and advocacy opportunities grow and thrive to ultimately form a COPD movement that will bring our silent epidemic to the forefront.

Happy Thanksgiving!

Pam DeNardo: A Decade of Helping Individuals with COPD

August 11th, 2014 | Author: Fabiana Talbot

This excerpt was drawn from the Spring 2014 issue of the COPD Digest.

When Pam DeNardo was diagnosed with COPD in 1999, there were scant resources available. She had to do her own research—teaching herself about medications, inhalers, and pulmonary rehabilitation, a task she said was daunting and scary without guidance or any references.

“I was terrified. Mpamdenardoy doctor said that at best I had three to five years to live,” DeNardo says. “’Incurable’— that’s all I could think of. Except, I couldn’t die. I was a single mother of two, I had a mother in her 90s who needed me, and a small insurance business that had just turned the corner and was making money. I simply could not be sick, and I could not die.”

Today, DeNardo is one of 35 associates who work on the COPD Foundation’s C.O.P.D. Information Line. When it was created in 2007, they averaged 300 inbound calls every month. Today, the associates field anywhere between 5,000-6,000 contacts each month. DeNardo was one of the driving forces behind the creation of the Information Line.

“Today, patients are still scared. You can hear that when they call the Info Line. The best thing is when I get a call from a newly diagnosed patient, because I can tell them I’ve had the diagnosis for 15 years, and you can hear the relief in their voices,” she says. “The Information Line, to me, is the culmination of everything I believed in.”

phoneIn 2007, she met with Bill Clark, director of outreach programs at the COPD Foundation, and John and Diane Walsh, and together, they recruited patients, set up the toll-free line for support and information, and the Information Line was born.

“The Foundation will continue to grow, and I believe it [a cure] will happen. And I hope to be there. I’m working hard to be there,” DeNardo says.

Read on about Pam’s journey on the COPD Digest website.

Shaming and Blaming

March 7th, 2014 | Author: Fabiana Talbot

The dreaded question for individuals living with COPD is “Did you smoke?” So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease.  All too often, people with COPD are afraid to reach out for help, let alone raise awareness for the disease, because they believe in the end they will be shamed and blamed for smoking.

Smoking does cause 75% of COPD – but did you know that 25% of COPD patients have never smoked? Environmental,

(taken from Pinterest.com)

(taken from Pinterest.com)

occupational, and genetic factors also cause respiratory diseases.  If you did or do smoke however, know that you are not alone. If you feel stigmatized for your condition, just reach out to our COPD community on Facebook or call the C.O.P.D. Information Line at 1 866 316 2673. What is important now is not to look at the past with regret and shame, but to the future with strength and hope. No one has the right to take that away from you.

This leads me to a piece of news that broke this week. Online news site, Mail Online, reported that late actress Shirley Temple Black was, “…a secret smoker who died from lung disease.” When she passed last month, her family did not disclose COPD as the cause of death, perhaps out of fear that she might be stigmatized for smoking.

This is just one example of an individual who had to live in silence about a disease that is the third leading cause of death in the United States. We hope those living with COPD today will come out of the shadows and help educate others about the nature of the disease. We believe the “shame and blame” culture will decline over time with greater awareness and education about the disease.

We are proud of all of our community members who speak out about COPD, and have the courage to stand up to those who may judge and marginalize us.

Have you been “shamed and blamed” for developing COPD? How did you deal with it? Please share in the comments section.

 

World COPD Day: November 20, 2013

November 18th, 2013 | Author: Fabiana Talbot

We are just two days away from World COPD DayThe COPD Foundation is supporting the Global Initiative for Chronic Obstructive Lung Disease (GOLD) to help raise global awareness on Nov. 20, 2013.  This is a prime opportunity for our community to come together in an effort to educate the masses about a disease that affects over 200 million individuals worldwide

Here are a few ways to get involved:

1. Tell your online networks about COPD Awareness Month by using #COPDAwareness on your social media pages:

  • Imagine breathing through a straw. That’s what it is like having COPD.  Learn how to protect yourself drive4copd.org. twitter#COPDAwareness
  • COPD kills more women than breast cancer and diabetes combined. Have trouble breathing? Go to drive4copd.org today. #COPDAwareness
  • World COPD Day is 11/20 – do you know about the third leading cause of death in the US? #COPDAwareness
  • Orange is the color of the movement to end COPD. RT if you or someone you know lives with this disease. @DRIVE4COPD #COPDAwareness
  • Repost if you or someone you know lives w/ COPD. Let’s find a cure for a disease that claims a life every 4 mins. #COPDAwareness 

Participate in the COPD Twitter chat on November 19 from 1-2 pm EST. We will be joined by representatives from the American Lung Association, the Centers for Disease Control, and NHLBI’s COPD Learn More Breathe Better campaign.  Use #COPD to join the conversation!

2. Go to DRIVE4COPD.org to join the COPD community and enter the NASCAR “Wave the Green Flag” Sweepstakes. You and a friend may win a trip to the DRIVE4COPD300 race at Daytona International Speedway!

cutout3.  Request a pad of Cure 4 COPD Pinwheel cutouts that can be sold at your office, school, cafeteria, etc. for $1-$5 and hang them with the donor’s name written on it. Pinwheel cutouts covering your wall will not only raise funds needed to work on the cure, but will remind everyone it is COPD Awareness Month.

E-mail FUNdraising@copdfoundation.org to make a request for a free pad of Cure 4 COPD Pinwheel cutouts.

        Visit the COPD ACTION CENTER.  All on one website you can:

  • Become a STATE ADVOCACY CAPTAIN (it’s really easy!)
  • Send pre-written ADVOCACY LETTERS to your representatives
  • Look up CONTACT INFORMATION for your local, state, and national representatives.
  • Sign up to RECEIVE ACTION ALERTS so you know when Congress is dealing with COPD legislation.
  • EMAIL YOUR FRIENDS about the Action Center.
  • FIND LOCAL NEWSPAPERS to write to about COPD.
  • Learn more about COPD LEGISLATION.
  • Learn how to EFFECTIVELY COMMUNICATE with members with tips on scheduling meetings, writing letters, or making phone calls

Go Orange for National COPD Awareness Month!

 

COPD8USA and the Community Education Workshop!

April 1st, 2013 | Author: Fabiana Talbot

The COPD Foundation is hosting the COPD8USA Conference June 14-15, 2013 Read more…

Happy Independence Day!

July 4th, 2011 | Author: Katelyn Turner

Photo by woodleywonderworks

In case you missed the memo (kidding), today’s the day our forefathers adopted the Declaration of Independence Read more…

Faces of COPD Blog on Health.com

April 6th, 2011 | Author: Katelyn Turner

The other day, our Faces of COPD Blog made the Top 12 list for COPD Blogs/Websites on Health.com! Read more…

Massachusetts COPD Summit

October 13th, 2010 | Author: Katelyn Turner

The Massachusetts COPD Summit, scheduled for November 9th, Read more…

Reaching out to Your Community is Easier than You Think

July 12th, 2010 | Author: Katelyn Turner

Since Saturday, I’ve been participating in the National Council of La Raza National Conference Read more…