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Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice. If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Medically Qualifying for Disability with COPD

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Medically qualifying for social security with COPD

Severe COPD can qualify for disability benefits. Achieving a disability approval though requires you have not just a diagnosis, but appropriate medical evidence to back up your claim. Financial hardship can sometimes prevent people from seeking treatment and building a medical history in the process. If this is true for you, the Social Security Administration (SSA) will still consider your application and even send you for evaluations with a contracted physician to get the records they need on your condition. If your COPD is severe and significantly disrupts or prevents employment entirely, then you can be approved for benefits.

The COPD Disability Listing
The SSA has disability listings for hundreds of medical conditions that it shares in its online Blue Book manual. This book is used by disability determinations staff when they decide eligibility for benefits. If you meet or closely match a disability listing, then you’re medically eligible. The COPD listing appears in Section 3.02, which covers various chronic respiratory disorders.

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Tags: COPD social security disability listing qualifying for social security Social Security resources
Categories: Health Policy and COPD

Faces of COPD: Jamie Sullivan believes that, "Together we will succeed in making COPD a national priority."

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Jamie Sullivan, the COPD Foundation’s Vice President of Public Policy and Outcomes, shares with us how she became involved with the organization, the two accomplishments she’s especially proud of, and how you can help make COPD the national health priority it deserves to be.

Jamie Sullivan COPD advocacy and public policy When Jamie began pursuing her Master’s in Public Health degree, the COPD Foundation (COPDF) had only been in existence for about four years. There was a field experience requirement as part of his program and Jamie was “lucky to have been able to move to Washington, D.C., to complete my field experience at a time when COPDF received its first advocacy grants.”

In January 2010, Jamie joined the Foundation full-time. Her role was to “grow Operation 435, the grassroots advocacy program, and work with states to develop COPD action plans.”

Thinking she didn’t really have a personal connection to this disease, “working for John Walsh and working with the COPD community made it seem personal.”

As it turned out, Jamie learned she did indeed have a personal connection. “I found out during prenatal testing that I was an Alpha-1 carrier and therefore have a slightly increased risk of developing lung disease down the road.” During and after college, incidentally, Jamie worked for the Alpha-1 Foundation.

Before joining COPDF, Jamie says she was “like most of the public and had not really heard of COPD or for that matter Alpha-1. As I got more involved, more and more friends and family chimed in with the now common ‘my Grandma had COPD’ or ‘my Dad had Alpha-1’.”

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Tags: COPD grassroots COPD National Action Plan Faces of COPD
Categories: Personal Stories

Faces of COPD: Elisha Malanga says, “Let’s all work together to make a real impact on COPD.”

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Elisha talks about her role at the Foundation and why research is essential to finding a cure. She also shares with us who inspired her early on, what motivates her now and how together we can have a real impact on this devastating disease.

Elisha

Elisha feels “privileged” to be the Chief Research Officer for the COPD Foundation (COPDF), which she joined more than 10 years ago. In her current role, Elisha oversees COPDF’s research programs, working closely with “an amazing staff, patients, partners, researchers and clinicians.”

As Elisha explains, “research is essential to finding better therapies and ultimately a cure for COPD. Working closely with patients to determine their research priorities has been enlightening and encouraging.”

One way that Elisha leads the charge for more research and ultimately a cure is through the COPD Patient Powered Research Network (COPD PPRN). “We have been using the COPD PPRN to recruit for studies and the response from patients has been overwhelming.” To learn more about the COPD PPRN, click here.

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Tags: awareness COPD Patient-Powered Research Network COPD Research
Categories: Personal Stories

Faces of COPD: Cara Pasquale says, "Don't give up hope."

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Cara Pasquale COPD Patient-Powered Research with the COPD Foundation

Cara tells us about the Foundation’s COPD Patient-Powered Research Network, the importance of advancing this initiative and how she first learned about COPD and its many causes.

Research is essential for improving treatments for COPD as well as finding a cure for this devastating disease. The COPD Foundation’s (COPDF) COPD Patient-Powered Research Network (COPD PPRN) aims to establish the largest network of individuals with COPD who are willing to share their health information and the impact this disease has on their lives. This, in turn, will lead to a deeper understanding of the disease and ultimately a cure.

As the Director of the COPD PPRN, Cara’s role is to “advance and expand the COPD PPRN by engaging patients in research, facilitating collaborations with stakeholders and building our research network.”

As Cara explains, “In my capacity I work towards the research aspect of the COPDF’s mission. We want to build the largest COPD patient-focused registry in the US (~75,000 people) where participants voluntarily share their health information, the impact COPD has on their lives as well as participate in research. This will enable us to do more research, discover more treatments and ultimately find a cure.”

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Tags: COPD Awareness Month COPD Patient-Powered Research Network
Categories: Personal Stories

Faces of COPD: Bret Denning says, "You aren’t alone in this fight.”

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As one of the newest team members at the COPD Foundation, Bret shares some valuable insights about his role and experiences to date. Read on to learn more.

Bret As the Grant Writer for the COPD Foundation (COPDF), Bret’s goal is to “help COPDF team members carry out their work and expand the efforts of the Foundation. This is a new position that was created a few months ago to diversify the Foundation’s funding streams.” We’re now starting to reach out to more Foundations and non-pharmaceutical corporations so support the organization as a whole and specific programs such as Harmonicas for Health.

Before joining COPDF, Bret “had heard of COPD but knew very little about it. One thing that amazed me was the reactions I got when I told people about my new position.”

He would often hear comments like “my mother (or sister, father, husband, friend, etc.) has COPD.” In one particular case, “a close friend told me she had been diagnosed with COPD more than 20 years ago and I didn’t even know! I was shocked by how prevalent the disease is.”

That’s why expanding the efforts of the Foundation is so important—whether it be through awareness, education, support, research or funding. And that’s where individuals can truly make a difference in people’s lives.

At COPDF, Bret “sees passion in every team member. The people here are incredibly dedicated to the organization’s mission of preventing and curing COPD and improving the lives of all people affected by this disease.”

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Tags: COPD awareness Faces of COPD Go Orange
Categories: Personal Stories

Faces of COPD: Vinny Malanga says, "Get involved in the community."

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Vinny tells us about his role at the Foundation, how he learned about COPD and the critical role technology plays in connecting the COPD community, raising awareness, improving education and furthering research. Read on to learn more.

Vinny As the Chief Information Officer at the COPD Foundation (COPDF), Vinny is responsible for “all of the Foundation’s technology including the infrastructure that powers our websites, COPD360social and BronchandNTM360social, our search engine optimization strategy and research capabilities.”

Vinny’s worked as a software engineer and data architect since 1996. He “began a successful consulting firm, which gave me the opportunity to develop technology solutions for many Fortune 100 companies in and around New York City. This resulted in me having a large technology ‘toolbox’ that I can apply to my work at COPDF.”

Vinny first learned about COPD after meeting John Walsh and his family through “my wife, Elisha, COPDF’s current Chief Research Officer. I had the privilege of knowing John for quite some time, having helped with technology challenges in the early days of COPDF. In 2013, John asked me to come on board in a more active role to help use technology to further COPDF’s mission.”

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Tags: COPD and technology COPD Awareness Month Faces of COPD
Categories: Personal Stories

Faces of COPD: Debbie Merrill, Vice President of the COPD Biomarkers Qualification Consortium

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Debbie talks about her role at the Foundation, the importance of collaborative research in developing better therapies and ultimately a cure for COPD and her personal connection to the disease.

“COPD is the third-leading cause of death in the United States, however, no new classes of drugs have been approved for use in the US in more than 20 years,” says Debbie, Vice President of the COPD Biomarker Qualification Consortium (CBQC) at the COPD Foundation (COPDF). “This is in part because of the limited number of tests that are recognized by regulatory agencies. Qualifying new biomarkers and clinical outcomes will hopefully provide measures to facilitate the development of new treatments.”

Kristen Willard with the COPD Foundation The importance of biomarkers is best described by the Food & Drug Administration’s Biomarker Qualification Program. This program “was established in 2010 to support the Center for Drug Evaluation and Research’s work with external stakeholders to develop biomarkers that aid in the drug development process…Biomarkers can be used in a variety of settings, including basic research, drug development and clinical practice. The Biomarker Qualification Program focuses on biomarkers used in drug development. Once a biomarker is qualified, it can be used in any drug development program under the context for which it obtained qualification.”

The mission of the CBQC is to (1) identify and qualify biomarkers and clinical outcomes to facilitate the development of new treatments for COPD; (2) facilitate collaboration among global researchers so the work is done efficiently.  By delivering on this mission, our pharmaceutical and academic partners will have the tools they need to better classify patients, e.g., by disease stage, and evaluate the effectiveness of treatments, which can lead to better therapies developed faster to benefit patients and open up more innovative and diverse avenues of research."

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Tags: COPD Awareness Month COPD Biomarkers Qualification Consortium Faces of COPD
Categories: Personal Stories

Faces of COPD: Kristen Willard, "...there is someone here who can help you."

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Kristen shares what she and her team do at the COPD Foundation, what drives her and what advice she would give to people living with COPD or caring for a loved one affected by this devastating disease. Read on to learn more.

As the Vice President of Population Health & Care Delivery, Kristen and her team “connect patients and healthcare providers to resources that can improve their lives and healthcare delivery, respectively.”

Kristen Willard with the COPD Foundation “Every day,” explains Kristen, “we interact with a variety of individuals—physicians and respiratory therapists, nurses and pharmacists—and people with COPD and those who care about them deeply. I’ve been with the COPD Foundation (COPDF) for 2.5 years and it’s an honor to do this work every day.”

She first learned about COPD when a family member told Kristen her father had been diagnosed with emphysema. “I will never forget that moment. I felt dazed and scared.”

Her father had a lot of support, though, says Kristen, and this made a big difference in his quality of life. “Thankfully, my father had an invested and supportive care team who ensured he used the medications that worked best for him, referred him to pulmonary rehabilitation and, when appropriate, end-of-life care.”

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Tags: COPD awareness Faces of COPD Go Orange
Categories: Personal Stories

Faces of COPD: Karen Anzalone says, "Advocacy is key to raising awareness."

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When Karen Anzalone lost her father to COPD in November 2010, she knew she had to do something to help others. Today the memory of her father, John Ferrara Jr., inspires her work as the New York State Captain, a C.O.P.D. Information Line Associate and grassroots advocate. She remains a passionate member of the COPD community because she doesn’t want patients and caregivers to feel the way she did in her search for education about the disease.

Karen Anzalone caregiver for COPD Awareness

For eight years, Karen’s father, John, a retired Navy flight engineer, had a chronic cough and breathing problems. When he had to catch his breath for 20 minutes after walking a short distance, he agreed to see a doctor. His own father lived with COPD so John was familiar with the disease and knew just how debilitating it was. When he was finally diagnosed, John wasn’t given much information on how to manage his COPD. That’s when Karen stepped in as her father’s primary caregiver and advocate.

Education is Key
Karen believes that education is the key to living a full life with COPD. “Often, patients are provided with their diagnosis and have limited information to best manage their disease. If my father and I had had more education it would have changed our situation dramatically because I would have been able to ask the doctor the right questions, especially regarding pulmonary rehab.”

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Tags: caregiving COPD Awareness Month Faces of COPD Karen Anzalone
Categories: Personal Stories

Faces of COPD: Orlan Holmes, "We don’t always look ill but we struggle for every breath."

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Because of everything he has been through, Orlan does a lot of advocacy work with the COPD Foundation. He is COPD State Captain for Indiana, co-chairs a support group, sets up around 25 health fairs a year and speaks at local universities about COPD. Read on to learn more.

Orlan Holmes Takes Action for COPD Awareness

Orlan was diagnosed with severe COPD and disabled when he was 52 years old. He was put on oxygen 24/7 with an average FEV 1 of 16 percent. “I went from working full time to being totally disabled in 13 days.” After many years of hard work, he received a double lung transplant.

Like many individuals with COPD, Orlan’s life changed with his diagnosis. “I learned I couldn’t do most of the things that I used to—it was an effort and a struggle to do anything. I had to rearrange my whole house so I could get things easier. I had to learn to do things more efficiently and slow down. I learned that if I took care of myself this wasn’t a death sentence but an opportunity for me to live and maintain quality of life for my final years.”

Told that pulmonary rehab would help, Orlan started “going to it. It made an amazing difference in my life. Not only did I become stronger but I also made new friends.”

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Tags: COPD awareness Faces of COPD Orlan Holmes
Categories: Personal Stories

Faces of COPD: Jane Martin is “...inspired by patients, some of whom became like family to me"

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Whether you’re an individual living with COPD, a caregiver or healthcare professional, education is key. Having the right educational materials is essential and that’s a responsibility Jane truly takes to heart. Read on to learn more.

As the Assistant Director of Education for the COPD Foundation (COPDF), Jane’s role covers all things education – whether it’s for patients, caregivers or healthcare professionals. Having the right materials and making sure these materials get in the right hands is no easy feat, but Jane approaches her role with determination, creativity and honesty.

Jane Martin COPD Foundation Education One of Jane’s key responsibilities is to update existing educational materials as well as coordinate the creation of new ones. Most recently, Jane updated the “1s, 2s and 3s of COPD” resource and created the new “1s, 2s and 3s” resources for bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.

Additionally, she works with “my colleagues on the Care Delivery and Harmonicas for Health teams to offer materials and programs to help improve the lives of all people affected by COPD. Our team is currently working to develop a more robust training program for Harmonicas for Health leaders. I also write some of the blog-posts for PRAXIS and articles for the COPD Digest.

All of these materials can be found in the COPDF online educational catalogue which features a variety of easy-to-read, up-to-date COPD patient education materials, information for healthcare professionals and Harmonicas for Health materials.

But that’s not all. As Jane explains, “I assist pulmonary rehab coordinators in finding educational materials and programs to further their patients’ education as well as their own professional development. I track inventory and work with our fulfillment center to make sure these materials are available to everyone who needs them.”

Jane first learned about COPD “when I began working as a respiratory therapy trainee in 1980.” While she doesn’t have family members with COPD, she was “inspired by patients, some of whom became like family to me.”

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Tags: COPD Awareness Month
Categories: Personal Stories

Faces of COPD: Edna Shattuck, "Together...we will eradicate COPD once and for all"

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Edna is a retired registered nurse and respiratory therapist, a Board member of the COPD Foundation, and an individual with COPD. Edna wants to share her story to give others an idea of what it’s like to have COPD and ask for support to help us turn the tables and eradicate this disease.

Edna Shattuck for COPD Awareness It’s difficult for me to comprehend that while COPD affects 30 million people in our country there are millions out there who don’t know its name or are suffering because they don’t know that they have it. Worse still, COPD is the third leading cause of death, but receives the least attention and funding.

When I was diagnosed with COPD, I already knew it. I was getting worse every day and of course I knew I absolutely had to see a doctor. But in all honesty, I was too ashamed to make the call.

My symptoms began with shortness of breath while doing things I never thought twice about—sweeping leaves off the porch, carrying groceries up the stairs or taking my dog for a walk. Basically anything requiring exertion or stamina was no longer an option.

COPD robbed me of my career and my income. I loved working but simply could no longer hide the fact that I couldn’t keep up the pace. I also miss the things my husband and I did together. We traveled, loved whitewater rafting and got to be pretty good at golf. Can you imagine how difficult it is for a spouse who has no experience dealing with a loved one who can’t breathe, has panic attacks and is getting worse every day?

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Tags: advocacy COPD Awareness Month COPD State Captains Faces of COPD
Categories: Personal Stories

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