Meet Your State Advocacy Captains!

My COPD story is actually about my family and our struggles to fight and advocate for a cure. In most, cases if one person becomes effected by a disorder it effects everyone and ours is no exception. For 27 years my husband and I have had a small ministry gaining a reputation for our willingness to help worthy causes. We are advocates for those without a voice or struggling to survive. In order to achieve our goals it was necessary to work with pastors, politicians local, state and federal, foundations and non profits. Our motto " helping those in need and the organizations' which support them." Never my husband, daughter or I ever imagine one day, we would be on the other side of the spectrum. COPD came on my radar when my step mother and mother in law were both diagnosed within months of each other. My step mother lost her battle with COPD only a few short years later. My mother in law, she has suffered many years with COPD and it's crippling effects. She has been a pillar of strength even in the worst of times.

As State Captain I hope to bridge the gap of understanding between those affected by lung disease, medical professionals, media and elected officials is immensely rewarding. As a COPD State Captain, nothing makes me prouder than to know those initiatives were met & people were positively impacted

My proudest COPD moments evolve around reaching out to support other Captains accomplish their goals and knowing makes a difference for those affected by COPD.

As State Captains we 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 of the time throughout my husband’s illness, his near death, his transplant and recovery, and the years of advocacy since.

Jim: Some of our advocacy work has included: travelling to 11 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. We have served as an executive board members of EFFORTS, have served as Southern Arizona Advocates for the American Lung Association, and have been featured in numerous articles in national publications, including the COPD Digest, Costco Connection, and others. We’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. We 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.

Mary: We have spoken to many support groups, Better Breather's groups, and others to spread awareness about COPD. We have developed several different PowerPoint presentations for use in giving informative and inspirational speeches. We have taught classes to pulmonary rehab patients and caregivers on living well with lung disease. We have taught classes to pulmonary rehab students in Tucson and in Phoenix, and to pharmacy students in Tucson. We have taught Hospice volunteers about handling and dealing with lung disease patients. We have traveled to Chicago, (three times), San Diego (twice), Denver, Miami, Trenton, NJ, Phoenix, Kalamazoo, MI, and London, England to present at COPD conferences. We were invited to participate in the COPD summit in Bethesda. We will be attending COPD 10 in Chicago again this summer.(Remove) We have written many articles for online support groups such as COPD360 and other Facebook groups. We have established a website (uncleim-auntmary.net), which contains many of the articles and posts, and several videos. I have been a Hospice volunteer for 21 years, and I have used that training in dealing with many COPD patients.

As a respiratory therapist and State Captain for Nevada, I hope to accomplish advocating and educating the public, elected officials, as well as HCP's on COPD. I am dedicated to being a voice for education and awareness for COPD. This voice can pertain to the patient and their families perspective and span to healthcare providers and the legislative branches that can contribute to positive changes for COPD awareness and treatment advances.

As a COPD advocate, I have participated in health fairs or community events to promote COPD awareness, sent a letter to my members of Congress about COPD, meet with an elected official to discuss COPD, and have signed up for COPD360Social.

As a State Captain, I am interested in connecting others in the COPD community to the resources available so they can live healthier, fuller lives as well as raising awareness by participating in health fairs and community events. I also would like to participate and promote research opportunities to help find a cure and recruit new State Captains and volunteers.

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.

As a State Captain for Pennsylvania, an RRT and a COPD Educator, I would like to increase community awareness of COPD, educate my patients about their disease & symptom management. I would also like to learn about what resources are out in the community for my patients.

As a COPD advocate I have educated RNs, aides, case manager, social workers, and physical & occupational therapists on COPD medication, disease and symptom management.

As a State Captain, I am interested in connecting others in the COPD community to the resources available so they can live healthier, fuller lives, as well as working with state, local, and national officials to improve COPD policy. I would also like to host and participate in fundraisers to support my community, and to raise awareness by participating in health fairs and community events.

As the newest State Captain for Washington, I hope to accomplish being able to share what knowledge and positive results I am experiencing with cardiopulmonary rehab. I do know this is not available to everyone (so sad). I want to figure out a delicate way to promote rehab without sounding boastful or bragging. I am so blessed.

As a COPD advocate, I have participated in COPD research opportunities such as the COPD PPRN, am a member of a support group, and have signed up for 360social. I have also spoken to my family and friends about COPD.

As a State Captain I hope to connect others in the COPD community to the resources available so they can live healthier, fuller lives, as well as to participate and promote research opportunities to help find a cure. I would also like to raise awareness by participating in health fairs and community events, and write about COPD to share my story and help raise awareness.

As the first COPD patient advocate and State Captain for Arkansas, I hope to accomplish bringing more awareness to others about COPD. I want others to understand that it not only affects the lungs, but other parts of the body as well. I want others to understand just how important breathing is for those of us that have COPD. I want my elected officials to understand just how important funding is to support research to find a cure.

As a COPD advocate, I have spoken to my family and friends about COPD, have signed up for COPD360social, and have started a COPD fundraising campaign.

As a State Captain, I hope to write about COPD to share my story and help raise awareness, work with state, local, and national officials to improve COPD policy, and raise awareness by participating in health fairs and community events. I would also like to participate and promote research opportunities to help find a cure!

As State Captain I hope to bring awareness to my community as well as my state.

My proudest COPD moment was becoming North Carolina’s State Captain.

My inspiration to share is “I can do all things through Christ who strengthens me.”

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!

My goal in life is to make as many people as possible aware of the importance of finding a cure for this dreaded disease. Smokers and nonsmokers are affected. At least 12 million American’s are unaware of the fact that they may have COPD.

As State Captain I hope to spread the word along with the COPD Foundation.

My proudest COPD moment was attending the lobby days in Washington, DC.

As a respiratory therapist and State Captain of Utah, I hope to accomplish three key objectives!

1. Improve awareness of the need for early identification and treatment for COPD.
2. Align legislators, healthcare professionals as well as patients and their caregivers to raise awareness and improve healthcare access so patients with COPD can have the right care, in the right location at the right time.
3. To improve general patient knowledge of their disease and it's trajectory so they are equipped to make educated decision about their healthcare to include advance care planning.

As a COPD advocate, I have created and gifted the Breathe-zy health promotion and disease prevention, free course to the AARC State Societies. It's an after school program that includes tobacco prevention and culminates in pig lung dissection.I have also written about COPD in a newspaper, magazine, or other publication, and have sent a letter to my members of Congress about COPD .

I was diagnosed with COPD over 15 years ago and found that we receive very little advice on living with COPD from our doctors. So for the last several years I’ve tried to bring awareness to several online communities that I administer. I spend a great deal of time helping educate and meeting COPD patients and have started a few exercise groups.

As State Captain, I am here to help as many people as I can gain a better understanding of COPD.

My proudest COPD moment was having a fellow patient tell me they learned more about this disease from me than their doctor.