Faces of COPD: Pam DeNardo, Grassroots Advocacy Coordinator at the COPD Foundation
Posted on September 24, 2018 |
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”