EFFORTS — PO Box 20241
Kansas City, MO 64195–0241

Phone: (877) 2–ENDCOPD
The information on (or referenced by) the EFFORTS’ website and discussion lists is not intended or implied to be a substitute for the professional medical advice of your own healthcare providers.

When you shop at Amazon.com, please use this link to help support EFFORTS.

AmazonSmile

Amazon sends collected donations to charities quarterly. Thanks for your participation.

As a patient advocacy group, we rely on your contributions/donations to maintain the mail list group, this website, and help board members attend conferences and to increase our participation in research.


COPD Resources and News for Living and Advocacy


🗣💨 • November is COPD Awareness Month • O2

November is National COPD Awareness Month in 2022 - NIH: Learn More Breathe Better® program

November is Alpha-1 Awareness Month in 2022 - Alpha-1 Foundation: “Let’s Cure It”



WELCOME TO EFFORTS!

Emphysema Foundation For Our Right To Survive has collected COPD news and resources including videos, books, advocacy tips, trials, and studies. Living with COPD, while a change in lifestyle, is not a death sentence.

Welcome Message, Conduct Guidelines & Disclaimer

     😎 📧 General Posting Considerations 📧 😎


LIVING WITH COPD
Everyday Support & Explanations

COPD Pocket Consultant Guide App for iOS and Android

Educational Videos and Podcasts Learn about COPD and healthier living

Glossary of COPD Words and Terms

DailyMed Official provider of FDA label information

Causes, Symptoms, & Overviews
- Breathing Techniques
- Coping with Everyday Tasks
- Diagnosis & Testing
- Doctor Visits
- Exacerbations & Panic Attacks
- Exercise, Rehabilitation
- Medicines & Devices
- Nutrition
- Oxygen, Oxygen Equipment & Oximeters
- Personal Accounts of Lung Transplant Approvals
- Sleep Disorders, Apnea
- Stem Cell Article from Jim Nelson
- Surgery (Transplant, LVRS, BVR, Stents)
- Travel (including O2 on airlines)

⭐ COPD Exacerbations: A Patient and Physician’s Perspective John Linnell, John R Hurst November 8, 2019

Suggested Inhaler Sequence — Previous
Suggested Inhaler Sequence — Current

Oxygen Manifesto, Oxygen Manifesto, Part 1: Advice from 3 Respiratory Specialists Noah Greenspan, Mark W Mangus Sr, RRT, RPFT, FAARC, & Oxygen Expert Ryan Diesem

Oxygen Manifesto, Oxygen Manifesto, Part 2: the Devices (Advice from 3 Respiratory Specialists) Noah Greenspan, Mark W Mangus Sr, RRT, RPFT, FAARC, & Oxygen Expert Ryan Diesem

Oxygen Manifesto, Oxygen Manifesto, Part 3: Tips and Tricks from 3 Respiratory Specialists) Noah Greenspan, Mark W Mangus Sr, RRT, RPFT, FAARC, & Oxygen Expert Ryan Diesem

COPD Foundation: Oxygen Therapy

Find a Local Pulmonary Rehabilitation Program LiveBetter.org

The Basics of Pulmonary Rehabilitation from the American Lung Association

Starting Pulmonary Rehab Soon After Hospitalization for COPD Lowers Death Risk

American Association of Cardiovascular & Pulmonary Rehabilitation — AACVPR Resources

Home Oxygen Therapy for Adults with Chronic Lung Disease. An Official American Thoracic Society Clinical Practice Guideline

10 Exercise Myths and Truths: Advice from a Respiratory Specialist Noah Greenspan

Pulmonary Rehab Alternatives

Depression and COPD Q & A

American Lung Assn Online Support Communities

Find a Physician — AMA

Zephyr Lung Valves Information


- Hospitals Offering Zephyr Valve Treatment
-
Members Stories on Valve Trials & Treatments

Members Stories on Valve Trials & Treatments

Spiration Endobronchial Valves


- Hospitals Offering Spiration Valve System Treatment
-
Patient Stories from Spiration Valve System

Medicare, Medicaid and Social Security

Medicare.gov: Find and Compare Information about Hospitals

Assistance: Gov, Social and Misc

Must Read Publications


COPD Foundation’s Slim Skinny Reference Guide®
Adventures of an Oxyphile 2 Free Audiobook download of the 2nd edition
PulmCCM Free weekly email with latest in pulmonary & critical care
The Pulmonary Paper This is a paid subscription

         Click here for more books

Special Interest Patient Surveys


Join the COPD Patient–Powered Research Network
Members Personal Pages and Profiles
Stigma and Stereotypes Survey Results from 2005
Trans Tracheal Survey Results from 2008

Questions and Answers by Professionals


Q & A Oxygen Equipment: (Pete’s Posts)
Q & A Medical: Drs Karpick, Yeager and Petty
Q & A Respiratory Therapy/Specialists
Q & A Transtracheal Oxygen (TTO)


New Meds, Trials, and Studies


MAC Lung Infection

Have you been recently/newly diagnosed with a MAC lung infection? MAC is the most common form of nontuberculous mycobacteria (NTM). NTM are bacteria commonly found in the environment. MAC can get inside your lungs when you breathe them in and can affect certain people more than others. Most people who come in contact with MAC do not develop an infection. However, some individuals are at a greater risk of developing an infection called MAC lung disease. MAC lung disease is a serious condition. If untreated, it can cause damage to the lungs.

A new study is looking for individuals with newly diagnosed MAC lung disease who may be interested in participating in a clinical study that is evaluating a drug for potential treatment of MAC lung infections and for the potential to improve symptoms of MAC lung infection including decreased respiratory discomfort and decreased fatigue.

Your participation in the study could potentially contribute to advancements in MAC lung disease research.

You can visit https://www.patientwing.com/ntmstudy-arise-encore-COPD for more information and to see if you may qualify. If you qualify to enroll, and decide to participate, you will be assigned to one of two studies investigating MAC lung disease.

Study to Assess the Efficacy, Safety, and Tolerability of SAR440340/REGN3500/Itepekimab in Chronic Obstructive Pulmonary Disease (COPD) (AERIFY-2) dated Mar 23, 2022, sponsored by Sanofi

Pivotal Study to Assess the Efficacy, Safety and Tolerability of Dupilumab in Patients With Moderate to Severe COPD With Type 2 Inflammation (NOTUS) dated Feb 10, 2022, sponsored by Sanofi

💠 COmmunity Patients at Risk of Viral Infections Including SARS-CoV-2 (CORVIS) See Article: UK Trial Recruiting Patients to Test At-home Nitric Oxide Nebulizer dated April 26, 2021, sponsored by Thirty Respiratory Limited

🅰 Evaluation of the Safety and Efficacy of TLD in Patients With COPD (AIRFLOW–3) Nuvaira Lung Denervation System (Nuvaira System), Nuvaira’s Targeted Lung Denervation Therapy Shown to Lower Hospitalization Risk and see News “Nuvaira Hopes” dated September 11, 2019, sponsored by Nuvaira, Inc.

RejuvenAir® System Trial for COPD With Chronic Bronchitis (SPRAY–CB) sponsored by CSA Medical, see also RejuvenAir®

LEEP Losartan Effects on Emphysema Progression LEEP is a randomized clinical trial evaluating the effect of Losartan in helping people with Chronic Obstructive Pulmonary Disease (COPD) with emphysema – a disease of the lungs. We are looking for adults 40 years of age or older, current or former smokers, with COPD to join our study. The study is conducted in different states across the country.

🚬 Insight COPD Intervention Study In Overweight Patients with COPD We are trying to find out if a program proven to help people lose a modest amount of weight and increase their physical activity will improve COPD symptoms for those with a high BMI. To be in the study, you will need to have COPD, high BMI, history of smoking, shortness of breath, and be 40 years or older.

🚬 RETHINC REdefining Therapy IN early COPD The purpose of the RETHINC study is to determine whether symptomatic current and former smokers with normal lung function will benefit from the use of bronchodilator therapy currently used to treat patients who have Chronic Obstructive Pulmonary Disease (COPD).

🧪 Chronic Obstructive Pulmonary Disease Clinical Trials at UCSF 🧪 Trial list upated at least twice a week

Emphysema/COPD Research Registry [PA only] Have COPD, 40 and up, 10 year smoking history

Pulmonary Fibrosis Click the link to find many clinical trials avilable offered for Idiopathic Pulmonary Fibrosis, Cystic Fibrosis, Pulmonary Fibrosis by Clinicaltrials.gov
COPD Foundation Research Click Research on the main menu

📋 Find a Clinical Trial 📋 American Lung Association 📋

Clinical Trials GPS Find Trials by the US State
Center Watch List Find Trials across the World
ClinicalConnection Find US and International Trials
US NIH ClinicalTrials.gov Searched for trials for COPD, Chronic Obstructive Pulmonary Disease, Lung Disease, Lungs and more

Miscellaneous


Lots of Links to Other Sites of Interest

Smoking & Tobacco


Still Smoking with Emphysema?
Cigarette Anyone?
Patient Stories
Quitsters–Stop Smoking Group
🚭 World No Tobacco Day 🚭
ADVOCACY/AWARENESS



Advocacy

- Talking Points for Presentations

- COPD Foundation — The COPD Action Center



- Tell Secretary Becerra to Act Quickly to Remove Menthol Cigarettes


COPD Awareness Month


· November is National COPD Awareness Month in 2022

· November is Alpha-1 Awareness Month in 2022

· Healthy Lung Month —October 2022

· World Bronchiectasis Day– July 1, 2022

· Letters to Editor

COPD in the News & Current Projects


🌍 Links to Worldwide Coronavirus Disease (COVID—19) Coverage 🌏

❌Coronavirus disease (COVID–19) Advice for the Public: Myth Busters❌

🎬COPD Foundation: Coronavirus Information for the COPD Community🎬

🍏A Guide to Living With COPD During the COVID–19 Pandemic: Help, Resources, and Making a Personal Checklist🍏

Monoclonal Antibody Therapy for COVID-19 What the COPD Community Needs to Know