Why Your Voice MattersIn the past, I have shared how important it is for our community to participate in interviews and surveys.  Sometimes these opportunities are part of FDA requirements that help move potential treatments forward, and other times companies simply want to learn directly from us so they can better understand our needs and improve future care. I know it is the holiday season, and many of us are busy with shopping, decorating, and making our homes feel festive and cozy. But please take a few minutes, just as I did, to complete the short survey and see whether you may be a good fit for this patient panel opportunity. If you qualify and complete a survey or interview, you will be paid for your time. A little extra money during the holidays can go a long way. Your voice truly helps shape the future of bronchiectasis and NTM care. Thank you for being such an important part of this community. 💙🩵💙 Patient Panel OpportunityKnowVanta, a market research company, in partnership with Rare Patient Voice, is looking for people who have been diagnosed with:
What You Can Expect Opportunities include:
Earn 25 to 125 dollars for each survey or interview, depending on length. Participants will be asked about their diagnosis, symptoms, and experiences with treatment and care. These paid opportunities are seeking your opinions and are not intending to promote or sell you anything. All information shared will remain confidential. How to ParticipateIf you are interested, click below. The screening process takes about five to eight minutes to complete.
Link to use: http://ntmbe.knowvanta.com 🌿 Educate. Participate. Advocate. 🌿
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Mention the word “microbiome” and my ears perk up. So you can imagine how excited I was to visit Dr. Leopoldo Segal’s laboratory at NYU Langone.  His team focuses on the lung microbiome, and much of their research involves identifying non-culturable microbes that live in the lungs and may influence whether or not we experience exacerbations. Why I Joined the NYU BiobankI am genuinely thrilled to participate in the biobank. Years ago, I signed off on them having access to my data and all bodily secretions. It was my way of contributing to science because I often do not qualify for clinical studies for bronchiectasis or MAC infections due to my low frequency of exacerbations. Call me a little eccentric, but knowing that my data, sputum, and blood are now in their system and biobanks makes me feel proud. Much more on this to come. Why Patient Input Matters in ResearchThere are so many ways to get involved in research, whether by participating in a clinical trial or simply taking the time to complete surveys. I used to think those survey requests were a way for companies to sell my information to insurance companies. I was skeptical until I learned more. Now I understand that the FDA requires patient input, which is why so many surveys exist. And when companies decide where to invest their research dollars, they rely on hearing from us to understand what the community truly needs. Surveys Count as ResearchSo now, even when I am not feeling motivated, I still fill out the initial screening questions to see if I qualify for an interview or a detailed survey. That is also research. And that counts. An Upcoming Research Opportunity for Our CommunityAfter Thanksgiving, I will post an opportunity for our community to participate in a new survey.
I hope you will keep all of this in mind and fill out the preliminary information. And the good news is that we will be paid for our time. I firmly believe that all stakeholders should be on equal footing. Scientists are compensated for their time and expertise, and we should be too. If you choose to donate your honorarium to charity, that is entirely your decision. What matters most is that we have a seat at the table and that our time is valued. Many of us in the bronchiectasis community have followed the development of brensocatib for years — from the promising results of the Phase 2 WILLOW trial to the eagerly awaited findings of the Phase 3 ASPEN trial.  While preliminary results were publicly shared last year and widely discussed at the 2023 Bronchiectasis World Conference in Dundee, Scotland, the news has now reached a significant milestone: the findings have been formally published in The New England Journal of Medicine — one of the most respected and influential medical journals in the world.
I knew this publication was on the horizon. Dr. Chuck Daley, a key voice in bronchiectasis care and research, has referenced it in multiple recent talks. Seeing it in print is a powerful moment — not just for him and the incredible research teams involved, but for all of us living with the daily challenges of bronchiectasis. It represents hope, validation, and real scientific momentum. As always, let’s stay the course while we wait for what may come next. That means keeping our weight in a healthy range, choosing nutrient-rich foods, doing our daily airway clearance, exercising regularly, managing GERD, and just as importantly — having faith, staying connected, and taking deep breaths when we need to. Because now more than ever, it feels like help is on the way.  When I spot a rat darting across the subway platform, my instinct is to sprint upstairs and flag down a cab. Similarly, during my time living in a house in upstate New York, discovering mouse droppings nestled among my silverware was enough to trigger an all-out cleaning frenzy. So, quite honestly, I have no affection for rodents and no qualms about their role in the testing of new drugs. However, my perspective shifts when it comes to larger animals and scientific experiments. While I understand the necessity of involving larger animals in research, it saddens me. That’s why it’s reassuring to know that researchers like Dr. van Ingen and his team are developing alternatives to using lab animals, such as the hollow fiber model. Traditionally, drug development relies heavily on animal models; however, these models often present limitations, particularly for NTM (non-tuberculous mycobacterial) research. For instance, according to Dr. van Ingen, mice do not naturally develop NTM pulmonary disease, which means researchers must compromise the mice’s immune systems. This artificial manipulation may not accurately predict human responses to treatments. It’s hard to believe, but the hollow fiber model—a mechanism involving tubes, filters, and glass cartridges—can offer a more human-like environment for drug testing. By simulating the conditions found in the lungs, researchers can gain valuable insights into drug efficacy and potential side effects. This innovative approach has the potential to accelerate the development of effective treatments for NTM. According to Dr. van Ingen, antibiotic safety is what matters most to him and his laboratory work focuses on ensuring that only the best antibiotics make it into clinical trials. Click to learn more about Dr. van Ingen’s hollow fiber model, Thank you to NTM IR for sponsoring this talk. It may be one of your nerdiest discussions yet, but you’ve educated us well over the years, and many of us appreciate a deep dive from time to time!  Mucus plays an important role in the body The sticky, slimy goo, mucus, plays an essential role in fighting off infections, shaping the gut microbiome and more. Mucus might seem like an unappealing part of our bodies, but it's a surprising health hero. Scientists see it as a biological marvel, essential for protecting us from bacteria, pollutants, and viruses. Dr. Katharina Ribbeck, an MIT professor of biological engineering, calls mucus a "masterpiece of biological engineering." It coats all our wet surfaces-eyes, throat, lungs, gut-keeping them hydrated and functioning. Made up of water and mucins, mucus creates a protective gel that keeps our nasal passages, gut and lungs free from harmful intruders. "It's designed to protect you from the outside world," says Dr. Richard Boucher, pulmonologist and director of the Marsico Lung Institute. This viscoelastic substance is thick enough to stay put but flexible enough to be cleared from the airways. Mucus also plays a role in sensory functions, covering our olfactory cells and taste buds so we can smell and taste properly. It shields our stomach lining from acid, helps food move through our intestines, and allows sperm to reach eggs in the cervix. Its mucins, dense proteins with complex sugars, even support our immune response by binding to pathogens and expelling them. Mucus overproduction, though, can lead to health issues, from stuffy noses to chronic conditions like asthma, COPD and bronchiectasis. The exciting news is that researchers are now exploring how to harness mucus for health benefits, developing treatments using mucins to target infections without antibiotics. Full article written by Nina Agrawal in The New York Times |
AuthorLinda Cooper Esposito, MPH is a health educator with bronchiectasis. She developed the BE CLEAR Method to Living with Bronchiectasis and writes with compassion and humor about this chronic lung disease. Archives
November 2025
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