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A Coronavirus Update for the COPD Community

Posted on September 02, 2020   |   

This article was written by Jamie Sullivan, MPH and reviewed by the COPD Foundation Medical and Scientific Advisory Committee (MASAC)

Updates from September 2, 2020

You, Chronic Lung Disease, and COVID-19

A short video guide to coping with the coronavirus pandemic from the COPD Foundation. Informed by COVID-19 community surveys, and COPD360social. Funded by a generous grant from a member of the COPD Foundation Board of Directors.

You, Chronic Lung Disease, and COVID-19

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

Bronchiectasis and COVID-19

Posted on October 09, 2020   |   

This post was written by Jane Martin, BA, CRT

Individuals with chronic lung diseases have always needed to take special precautions to stay as healthy as possible and avoid situations that could harm their health. With the global coronavirus (COVID-19) pandemic, this has become even more important as we look to safeguard our health and the health of those around us.

So, what about those of you with bronchiectasis? How can you manage it effectively in this pandemic?

What is bronchiectasis?

Before we go on, let’s have a quick review of bronchiectasis. Bronchiectasis is a chronic lung disease where the tubes that carry air in and out of the lungs become widened, scarred, and inflamed.1 Cilia are tiny hair-like structures lining these airways. Their job is to move mucus up and out of the lungs. In bronchiectasis, the cilia don’t work as well as they should, and in some cases, they do not work at all. This can cause mucus to build up, triggering a chronic cough, encouraging germs to grow, and leading to more lung infections.

Some people who have bronchiectasis may have another chronic lung disease like COPD or asthma and may experience additional or stronger symptoms. For more on this, and other aspects of bronchiectasis, follow these links to our previous blog posts.

Now let’s talk about ways to stay well with bronchiectasis while living in the time of a respiratory pandemic.

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Categories: Coronavirus (COVID-19) Tips for Healthy Living

COVID-19 and the Chronic Lung Conditions Community – How are we doing after 6 months?

Posted on October 06, 2020   |   

This article was written by Delia Prieto, BSEd, MSEd, Danielle Boyce, MPH, Bill Clark, and Ruth Tal-Singer, PhD

It has been over six months since the COPD Foundation’s first international community survey that helped us understand the impact of the global COVID-19 pandemic on individuals with chronic lung conditions. We have been using the results to provide resources and programs to our community members in addition to developing new research and advocacy efforts. We previously reported highlights from Survey #1 and Survey #2 and are now analyzing the data from Survey #3, which was live for approximately one month, from mid-August to mid-September 2020. The survey was promoted through several COPD Foundation channels including our online communities, e-newsletters, social media and other advocacy groups.

Profile of Survey Respondents

Not all respondents answered every question, so the percentages reported in this article reflect only the respondents who answered the particular content being reported, unless otherwise specified. Approximately one quarter (26%) of the respondents indicated that they had completed at least one of the previous COPD Foundation’s COVID-19 surveys, which will help us understand what changed over 6 months.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

An Interview with Janice Cotton, State Captain Illinois and IMPACT 2020 Advocate

Posted on September 29, 2020   |   

This article was written by Christina Kononenko, BA, MSEd and Janice Cotton, State Captain Illinois

The COPD Foundation recently had a virtual chat with Janice Cotton, State Captain for Illinois for the last 10 years and IMPACT 2020 participant/advocate. Read on to learn more about Jan and her advocacy work.

Tell us about yourself.

I am an individual living with COPD, diagnosed in 2000. The impact of my diagnosis was devastating, to say the least.

What prompted you to advocate in the first place, and what continues to drive you to this day?

Listening to other people living with COPD who are in pain because of not getting answers to questions about their condition, their medicines, Medicare, and disability prompted me to start working for others. I had been through the process. Although I was still learning and searching for answers, I could certainly share what I had learned.

What types of advocacy work have you done to date?

I have held health fairs, spoken at pharmaceutical conferences and worked on panels giving the patient perspective on what our needs are and how clinicians can best help us.

Why did you decide to participate in IMPACT 2020?

Having worked on Lobby Day on Capitol Hill, I have knowledge of the process and what it takes to get our voices heard.

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Categories: Advocacy Community Announcements Personal Stories

COPD Foundation launches a Digital Health and Therapeutics Accelerator Network, COPD360Net

Posted on September 22, 2020   |   

This article was written by Cara B. Pasquale, MPH, Senior Director of Research and Project Lead for COPD360Net

The COPD Foundation, a not-for-profit organization focused on improving the lives of those affected by and stopping the progression of COPD, is delighted to announce the launch of the COPD360Net initiative.

COPD360Net Logo

COPD360Net has been created to deliver the following:

  • Allow clinical trials in COPD and related chronic lung conditions to progress more quickly and easily;
  • Increase the availability of telehealth, digital health tools and medicines that treat COPD; and
  • Prevent disease progression and improve lives of patients with COPD and related chronic lung conditions at all stages of the disease

The last approved new class of medicines for COPD was in 2011 and patient research has demonstrated the need for new and better medicines. COPD360Net will speed innovation by putting the patient at the heart of the initiative, as well as moving to improve uptake of new treatments in clinics.

COPD360Net consists of a network of COPD Foundation-accredited care centers as well as experts in the field of COPD and related lung diseases. It is overseen by a Steering Committee from the participating centers, plus members of the patient and caregiver community.

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Categories: Community Announcements COPD Foundation Initiatives and Activities Related COPD News

Q&A on the influenza vaccine (flu vaccine)

Posted on September 09, 2020   |   

This article was written by Kristen Willard, MS

An Interview with Dr. Barbara Yawn, COPD Foundation Chief Clinical Officer

We recently spoke with Dr. Barbara Yawn about questions related to the flu vaccine and people with COPD. Here are some of her answers.

I am 70 years old and have COPD. What kind of flu vaccine should I get?

Anyone 65 or older will want to ask for the high-dose quadrivalent influenza or flu vaccine. This type is given to older adults, because as we age, our immune systems are not as responsive. It has four times as much of the antigen or material that produces the immune or protective response. We want to give more antigen to our bodies (which is what prompts our immune response) so our bodies have a better chance of responding.

While the type of vaccine that is just sprayed into the nose sounds like a great idea, you will need to get the injected vaccine rather than the intranasal version. The intranasal version does not work well in adults, especially older adults and is not approved for or paid for use in adults over 40 years of age.

When should I get the flu vaccine?

The best time to get the flu vaccine is in September or October. You do not need to get the vaccine as early as July or August. We want you to wait so the protection lasts throughout the entire flu season which in recent years has extended into the early spring.

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Categories: Tips for Healthy Living

An Interview with Carol Rubin, New Jersey State Captain and IMPACT 2020 Advocate

Posted on September 01, 2020   |   

This article was written by Bret Denning, JD and Carol Rubin, MEd, MS.

The COPD Foundation recently had a virtual chat with Carol Rubin, New Jersey State Captain and IMPACT 2020 participant/advocate. Read on to learn more about Carol and her advocacy work.

How long ago were you diagnosed with COPD?

I was diagnosed with emphysema in 2014. Like so many others, I had COPD several years before I was diagnosed. I attributed my shortness of breath to being out of shape, needing more exercise and did not connect it to a lung disease until I finally saw a pulmonologist.

How long have you been a State Captain?

I became a State Captain for New Jersey a year ago. Prior to that, for two years I participated in the Foundation’s Advocacy Ambassador program, which provided participants with training, mentoring and important skills in grassroots advocacy.

What motivates you to advocate for the COPD community?

Raising public awareness of all aspects of COPD is my cause. Although COPD is the fourth leading cause of death, so many people are not familiar with it; they do not know what it is like living with COPD. Funding is critical to seeking a cure. I want to use my voice and my personal story to advocate and make an IMPACT!

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Categories: Advocacy Community Announcements Personal Stories

How Can You Become a COPD Advocate?

Posted on August 20, 2020   |   

This article was written by Bret Denning, JD.

What does it mean to be an advocate? That’s an interesting question that can have several different answers. For some, it means working to help others through education and outreach. Advocacy is not something out of reach – it simply means to make people aware. The COPD Foundation wants to help you recognize that as someone living with COPD, you have a voice that needs to be heard in whatever way is most comfortable for you.

In this video, Become a COPD Advocate and Make and IMPACT!, Stephanie Williams, Senior Director of Community Education Programs at the COPD Foundation, had the opportunity to speak with John Linnell, a state captain from Wisconsin. As a state captain, John is one of our most passionate advocates and is always willing to lend his voice in any efforts to help the COPD community. He believes that it is critical for the patient voice to always be heard. John wanted to share his story of how he became a COPD advocate and what it means to him. After being forced to leave the workforce due to COPD, John realized he had two options: sit home and "be that old man with a hose in your nose" or get involved and help educate others through their journey. He knew how challenging his own journey was and helping others overcome barriers like the ones he faced was an enlightening experience for him. It was a desire to speak on behalf of others that brought him together with the COPD Foundation and our State Captains program. John wanted people to know that even if there is no cure for COPD right now, the disease is not a death sentence and that there is so much that can be done. How anyone deals with their COPD is completely up to them. John rejected the "woe is me" approach and decided to not only live with it but work every day to help others. To him, that is the point of advocacy—let your voice be heard!

As a COPD advocate, John wants others to become involved! He emphasized that there is not a "one size fits all" approach to advocacy and that people can find what makes them the most comfortable, from handing out literature at a health fair or participating in a conference to speaking with pharmaceutical representatives or members of Congress. John gave an example of a friend who was not comfortable with public speaking but was a powerful advocate through social media. The question thus becomes, how does one become a powerful advocate? This is where IMPACT comes in.

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Categories: Advocacy Community Announcements Personal Stories

The EveryDay Health Guide to Living with COPD In an Era of COVID-19

Posted on July 30, 2020   |   

This article was written by Bret Denning, JD.

The COVID-19 pandemic has certainly been a source of worry for people around the world as we all adapt to wearing masks in public, social distancing and for a while, simply isolating ourselves from the rest of society. For people living with COPD, the pandemic brought its own set of challenges and concerns. People had, and still have, questions such as how the virus can affect their lives and health or if they are more vulnerable to the virus. As people struggle to find a new “normal,” they can often get overwhelmed with the new changes in their daily lives.

From the onset of the pandemic, everyone at the COPD Foundation has sought to keep our community informed and up to date on the latest news related to COVID-19 through webinars, surveys, Facebook Live events and blog posts. Our COVID-19 information page is filled with critical information for anyone living with COPD who has questions about the virus.

We would like to share another valuable resource with you. Our friends at EveryDay Health have put together this Guide to Living with COPD During the COVID-19 Pandemic that is filled with helpful information for anyone affected by COPD who has questions or concerns related to the pandemic.

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Categories: Coronavirus (COVID-19) Tips for Healthy Living

NTM Lung Disease: Support Resources and Research and What you Need to Know

Posted on July 27, 2020   |   

This post was authored by Jane Martin, BA, CRT

This is the final in a series of four blog posts on nontuberculous mycobacterial (NTM) lung disease. Thank you to Made Pramana for sharing the patient perspective in this post.

In the first three blog posts, we learned about NTM lung disease, what it has in common with COPD, what causes it, how it is diagnosed, and how it is treated and managed.

Now let’s look at support resources for people impacted by NTM lung disease and/or bronchiectasis. We will also talk about research.

When a person has been diagnosed with NTM lung disease and/or bronchiectasis, it is of course important to learn from doctors and other health care professionals. These professionals can help individuals with NTM lung disease learn about the physical aspects of the disease and how to stay as active and well as possible despite these diseases.

In addition, it’s essential for the person diagnosed with NTM lung disease and/or bronchiectasis to know where they can find ongoing education, emotional support, and encouragement. Some of this support can come from peers – those who have been diagnosed and are living with the disease every day. Family members and caregivers of those with NTM lung disease and/or bronchiectasis can also benefit from this education and support.

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Categories: Education, Resources and Studies

A Message to the COPD360social Community

Posted on June 23, 2020   |   

This article was written by Jamie Sullivan, MPH

Hi Friends,

Earlier today I sent the below message to our State Captain Network, but I wanted to share it with you as well. I consider all of you as part of our extended family of advocates and champions for the community and I am so grateful for all that you do to support each other and for how you support the COPD Foundation team. It is very bittersweet to post this but rest assured it is not goodbye for good, I am an honorary member of this community for life and will always carry your voices forward in my work.

Dear State Captains,

Sixteen years ago I was a college student in Miami staring at a job board I saw on a walk across campus when my eye caught a listing for an off-campus work-study position for a place called the Alpha-1 Foundation. The prospect of working somewhere other than a campus office filing and answering calls was thrilling but little did I know this chance walk by the job board would shape the rest of my life in the way that it has.

Over the next decade, I was privileged to learn from the best. John Walsh, the founder of both the Alpha-1 and COPD Foundations, was one of a kind for so many reasons, including his ability to build organizations, innovative programs, and consensus where people thought it was impossible. He was also a one of a kind boss. He believed in his team and this act of having more confidence in me than I probably deserved at such a young age, taught me I could not only find creative ways to make John’s ideas a reality, but I could seek out and form ideas on my own. His commitment to the notion that if you have a role in the problem you are trying to solve, you have a role in the solution, shaped my approach to building impactful collaborations and above all, his firm belief in the role that patients and caregivers play in ALL conversations, scientific, clinical, policy and more, will ground all future work I do.

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Categories: Personal Stories

The PF Perspectives Project

Posted on June 17, 2020   |   

The article was written by Ruth Tal-Singer, PhD

The COPD Foundation is partnering with the Three Lakes Foundation on a common mission of improving the lives of individuals living with Chronic lung diseases.

Pulmonary fibrosis (PF) is a lung disease that happens when lung tissue becomes damaged and a thickened, stiff scar tissue makes it difficult for the lungs to function. PF symptoms include persistent cough, shortness of breath and fatigue. Some individuals with PF also have a diagnosis of COPD.

We are sharing with you an important message to Patients, caregivers and healthcare professionals: Pulmonary Fibrosis (PF) innovators want to hear from YOU.

To find new innovations that will make a difference for the 3-million people living with PF worldwide, Three Lakes Foundation and MATTER have partnered to launch the PF Perspectives Project. The project aims to find and amplify stories of people in the PF community and — through the learnings of those stories — identify the types of solutions needed and work with innovators to develop them.

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Categories: Related COPD News

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