Faces of COPD: Pam DeNardo, Grassroots Advocacy Coordinator at the COPD Foundation

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Pam DeNardo, Grassroots Advocacy Coordinator at the COPD Foundation, collaborates and works on the COPD State Advocacy Program. This grassroots initiative encourages everyone in the COPD Community-patients, caregivers, health care provider, and students- to come together to lobby on behalf of the 30 million Americans living with the disease. Pam talks about her experiences as a COPD patient, and how she came to be involved in advocacy, and The COPD Foundation.

I first learned of my COPD diagnosis in January of 1999 after a rather long bout of pneumonia. Back then, there was limited information on COPD, and I was told I had at least five good years to live. Well 18 years later I am still here. I was lucky in that it was around that time that COPD began to be known and advocacy had just begun. However, I did have to find a great deal of information myself. There was no COPD Foundation, just a few online groups who were great if you knew how to find them.

I was no different than any other newly diagnosed patient and went through all the stages you get when you are diagnosed with a disease that has no cure. In a Pulmonary Rehab class, I met a gentleman who was working on advocacy with the American Lung Association of Chicago. One day, he asked if I would go to Washington DC in his place on behalf of the Lung Association and the Tobacco Free Kids Group and speak on the dangers of smoking. I was in Illinois then and Senator Durbin was holding a subcommittee meeting about lawsuits formulating against the tobacco industry. Senator Durbin wanted someone from his state who also suffered from a disease caused from smoking. My first experience in speaking about COPD was both frightening and enlightening as I knew when that was over I could speak anywhere.

After that speaking engagement, several people in the COPD community asked me to speak at other venues such as the ATS conferences, ALA, AARC etc. There were few COPD patients speaking publicly at that time. I simply told my story which I found to be quite easy and immensely gratifying. It was at one of these conferences that I inevitably met John Walsh, who would later start the COPD Foundation. In 2006, I ran into John again in Orlando and he told me of his plans for the Foundation and asked me if I wanted to help. I have been a fan of the Foundation ever since and will always offer whatever time I have to work with them.

Not speaking as often as I used to due to medical issues other than COPD, I would non the less encourage any patient or caregiver to go out there and tell their story. Please believe that people want to hear it and you can at the same time help so many others who may feel they are alone. You will also help spread the word about COPD. Every place I have ever spoken, the people have been kind, grateful and ready to help in any way.

In 2007, the Foundation started the COPD Foundations Information Line. Several patients, caregivers, medical affiliates could call to get support, educational materials which was manned by COPD patients and caregivers. Once you get that diagnosis, you need to understand and become informed. The COPD Foundation’s Information Line does just that. It educates and empowers, removing the crippling fear and isolation a patient feels when told of this diagnosis. Everything starts from that point on – so I am very proud of working on the Information Line and dedicated to continuing for as long as possible.

I've had a lot of fun working with the Foundation but the one I will never forget is when I was seated in the Senate Chamber I was told I would be the first to speak and then shown the green yellow and red lights on the edge of the table where I sat. Green for go and so on. I was then told I had 5 minutes until the red light went on and I would be done. Well I had a speech that I knew was going to run at least 8 minutes so I put the water pitcher in front of the lights, so they would not distract me. Afterwards Senator Durbin told me he saw what I did and said, “don't tell anyone else your trick”

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  • Thank you for all the hard work you do for the Foundation and Information Line Pam!
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  • Great story. And Thank Yoy
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  • Wonderful story, thank you for all the work you do and continue to do!






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  • Hiya Pam. Oh how I remember those days and miss going to DC to explain COPD to them. Last time I saw you was at the COPD Mets Day. I also have developed something else called A-fib. Glad to see you are doing so well. I had to stop working on the phone line when they started paying because it would upset my income but am pleased to hear you're still there.
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    • Nice to hear from you too. I remember that Mets game well. We all have to slow down a bit sometime.. Me too I know longer travel but still have a working mouth so here I am. Take care and stay well.

      Pam
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  • My Dear Pam, you are the reason I do what I do. The day I called the info line feeling sorry for myself and you heard something in my voice and asked if I would join you and others on the info line. I will be ever grateful. I learned so much from you and others. Hello Bunny. Pam, you, my daughter and me were all at that game. So was Linda W and Karen. Great memories.
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  • Pam, I remember meeting you several years ago in Orlando - I can't remember what the event was, but you were there, with information about COPD. I can't remember what the exhibit was called, but I remember going inside it, sitting down, and taking a virtual tour of the lungs. Wonder what ever happened to it? I think it was sponsored by a pharmaceutical company, maybe? Anyway - thanks for all that you have done and will continue to do for all of us.
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    • I think you are talking about the plane/rocket ship with a film on a trip through the lungs?
      We also were on a patient panel together I think in Chicago but I might be wrong. Nice to hear from you again
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    • Yes - that was it, Pam. And yes, we were on a panel together in Chicago and also we both presented at a COPD Education Workshop here in Florida - in Sarasota, maybe? Good to see you here.
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    • I'd sure love to know what happened to that ride.
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