Meet Your State Advocacy Captains!

State Captains are volunteers with COPD, caregivers, friends and family members or healthcare providers who use their contacts and talents and partner with the COPD Foundation to serve as state and community leaders.

Captains promote the importance of becoming a part of the COPD community. They work to spread COPD awareness in their state and local areas, mentor fellow COPD community members, and participate in online and in-person grassroots advocacy and community building activities focused on health policy issues that are important to those who have COPD. To learn more about becoming a state captain in your area please email statecaptains@copdfoundation.org.


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Rita Newman

Rita Newman Profile Photo Sherwood, Arkansas
arkansas02@copdfoundation.org

I have been a respiratory therapist for over 30 years and have been involved most of that time with critical care therapy but always caring for COPD patients. I now teach COPD education to the patients, which has opened a completely new avenue for me. I want to get more advocates involved in COPD awareness, so we can create more attention to this disease and hopefully increase funding for research.

As State Captain I hope to get more people involved with COPD advocacy and to get more information out to patients in the community to help educate them so they can better take care of their disease.

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John Linnell

John Linnell Profile Photo Viroqua, Wisconsin
wisconsin03@copdfoundation.org

I don't want others to have to figure so many things out entirely on their own such as I had to do. There are so many resources and forms of help out there that are actually so easy to reach out to, one simply has to know they are there!

As State Captain I hope to promote patients helping patients, in both education and in research.

My proudest COPD moment was being featured as the cover article in the COPD Digest.

My inspiration to share is if you’re not having fun, you’re doing something wrong and patients listen to patients.

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Elizabeth Berger

Elizabeth Berger Profile Photo Silver Spring, Maryland
maryland8@copdfoundation.org

I’m a COPD advocate because I have seen the effects first-hand within my own family. It saddens me that many people are unaware about the seriousness of COPD, which often involves chronic physical pain and sometimes, mental illness. COPD doesn’t get nearly as much attention within the health research domain, and I would love to see research grow in this area. Research is the cornerstone of advancement, and has to be done to improve prevention efforts, treatment, and the overall quality of life for people affected by COPD! Achieving this goal starts with spreading the word about COPD.

As State Captain I would like to be more engaged with the local COPD community and assist in research initiatives. I want to connect more with other State Captains and providers so I can learn more, specifically about pulmonary rehab and how to make it more accessible for people who don't have access to it. I also would like to be more politically active and meet with elected officials regarding COPD more regularly. I would like to increase my participation in community events and fundraisers to raise awareness and generate funds to support the COPD Foundation.

My proudest COPD moment was being asked to assist with the recent COPD Foundation grant proposal. I was also thrilled when I inspired a few other folks to submit comments regarding COPD-legislation.

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Jim and Mary Nelson

Jim and Mary Nelson Profile Photo Tucson, Arizona
arizona@copdfoundation.org

As State Captain I hope to raise awareness, use our story to educate, to inspire, and to support lung disease patients and their caregivers in their quest to achieve a decent quality of life.

Jim’s proudest COPD moment is surviving! Having the fortitude necessary to remain healthy enough to qualify for a double lung transplant at the age of 71.

Mary’s proudest COPD moment is not a particular moment but I am proudest of my capability to maintain a positive attitude the vast majority fo the time throughout my husband’s illness, his near death, his transplant and recovery, and the years of advocacy since.

Some of our advocacy work has included, travelling to 10 national or state conferences to present information and inspirational talks on living with lung disease, travelled to London, England to speak to a COPD conference, participated in COPD Action Plan working group in Bethesda, Maryland, have written many articles for COPD360 as well as other online support groups. I have served as an executive board member of EFFORTS, have served as Southern Arizona Advocate for the American Lung Association, and have been featured in numerous articles in national publications, including the COPD Digest, Costco Connection, and others. I’ve taught classes to rehab patient and caregivers to RT students, to pharmacy students, and to hospice volunteers. I maintain an online blog of articles and videos that my wife (caregiver) and I have produced. We also counsel patients, caregivers and potential transplant recipients in person, by phone, and through email. I have met with Representative Raul Grijalva and we have talked with him and his executive assistant at length about COPD awareness. We also presented Grijalva with an award for his participation in the COPD Caucus.

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Linda Mullin

Linda Mullin Profile Photo Princeton, West Virginia
lrmullin@hotmail.com

As an Alpha-1 Antitrypsin Defeciency/ COPD’er, it is important to get the word out about these diseases. The leaders of our state and nation have an impact on how chronic health issues are being handled. Letting officials know our current status by speaking up will hopefully help our communities in the fight for breathe. MY LIFE IS WORTHWHILE, AND SO IS YOURS! Speak up or you are never heard. The silence of voices: “A person dies in the United States every four minutes from COPD---the third largest killer.”

As State Captain I hope to raise awareness for COPD and Alpha-1 in my state, letting every individual know they are not alone.

My proudest COPD moment is helping others. Not proud for myself but of them in learning more to make their lives better. Anxiety is the fear of the unknown. Knowledge is the key factor in unlocking that fear through understand.

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Sharon Fairweather

Sharon Fairweather Profile Photo Massachusetts
massachusetts@copdfoundation.org

I’m a COPD Advocate because I wanted to help make a difference for the 30 million Americans with COPD. A democracy runs best with the input of its citizens so for me being an advocate is about being sure my voice is heard. As an advocate I want to make sure Congress knows who the COPD community is and what we want.

As State Captain I hope to increase awareness and funding to move towards a cure.

My proudest COPD moment was seeing that some of the education I provide helps others to have an increased quality of life.

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Mike Hess

Mike Hess Profile Photo Kalamazoo, Michigan
michael.hess@med.wmich.edu

I am a Respiratory Therapist helping to educate people about lung disease.

As a State Captain, I hope to help change the trajectory of COPD in the United States by increasing awareness, funding, and research.

My proudest COPD moment is when a patient thanked me because, as they said, they "didn't know how bad my breathing was until it got better," because of their appointments with me.

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Deb Daro

Deb Daro Profile Photo Metuchen, New Jersey
NewJersey06@copdfoundation.org

I am a patient.

By becoming a COPD State Captain, I hope to raise awareness in order to help raise funding for research. Ultimately it is about a cure.

Knowing how much exercise has helped me, I want as many people as possible to get up and moving again.

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Yvonne Gamelin

Yvonne Gamelin Profile Photo Roxbury, Connecticut
connecticut03@copdfoundation.org

As State Captain I hope to build awareness and collaborate with pulmonary rehab, pulmonologists, colleges, and EMS to increase access to health and raise political awareness as well.

Some of my advocacy work includes speaking at the 2017 Readmissions Summit and the Advisory Board. I have also met with Senator Gail Slossberg and work with nursing and respiratory therapist schools to help develop events and education.

My inspiration to share is, wellness maintained is quality of life lived!

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Shereen Bailey

Shereen Bailey Profile Photo Miamisburg, Ohio
ohio10@copdfoundation.org

I am a COPD advocate because I know so many who suffer from this disease could have a much better quality of life if we could only reach them. Almost everyone has, or knows someone who suffers from COPD, yet it is not talked about like so many other diseases. The paradigm need to change, and I want to help change it.

As State Captain I hope to change the perception that their isn’t much that can be done to change the quality of life for someone that has COPD.

My proudest COPD moment happened with a patient I had been caring for with severe COPD named John. When I first started caring for him, he was so short of breath and weak it was difficult for him to even get out of bed. We worked extensively on breathing retraining, pulmonary rehab, relaxation techniques, and disease education. My proudest COPD moment was when John stopped by to visit several weeks after he had discharged home. We were walking down the hall together. He had his portable oxygen concentrator over his shoulder and was laughing at me, because he was walking so quickly, I was struggling to keep up. It struck me at that moment that the work we do for these patients really do have the ability to change their entire lives dramatically.

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Ken Ellis

Ken Ellis Profile Photo Kennewick, Washington
washington04@copdfoundation.org

I’m a COPD Advocate because I wanted to help make a difference for the 24 million Americans with COPD. A democracy runs best with the input of its citizens so for me being an advocate is about being sure my voice is heard. As an advocate I want to make sure Congress knows who the COPD community is and what we want.

As State Captain I hope to keep the COPD community in our elected officials minds and bring a face to them.

My proudest COPD moment is when I am able to help somebody.

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Deborah Willis

Deborah Willis Profile Photo Waxhaw, North Carolina
northcarolina@copdfoundation.org

As State Captain I hope that I can make a difference in patient’s lives--they are so underserved.

I have been a respiratory therapist for over 28 years. This particular patient population has been overlooked for so many years. Many COPD patients have been hard-working, dedicated members of society that deserve a voice and the ability to receive many of the resources that have been made available to other patient populations. I truly believe that the more focus and attention we provide to this patient population, the better outcomes we will collectively achieve which will lead to potentially better quality of life for this underserved group./p>

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