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 Do You Qualify for a Non-CF Bronchiectasis Clinical
Trial?


This Phase II study is testing an
investigational medication for non-cystic (non-CF) fibrosis bronchiectasis.
If you are an adult who has had at least one exacerbation in the last year
you may be able to join. 


For more information https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies

 Do You Qualify for a Non-CF Bronchiectasis Clinical Trial?


This Phase II study is testing an investigational medication for non-cystic (non-CF) fibrosis bronchiectasis. If you are an adult who has had at least one exacerbation in the last year you may be able to join.

Check to see if you qualify Study Details | A Phase II Study of Ensifentrine in Non-Cystic Fibrosis Bronchiectasis | ClinicalTrials.gov or contact clinicaltrials@veronapharma.com.

Hi, thanks to all who make this resource possible. I was diagnosed with Bronchiectasis and MAC in 1/25, did only airway clearance for 8 months, and started on the big 3 after a repeat C-scan showed the MAC had proliferated. So far I haven’t had much trouble with the ethambutol and azithromycin, which I’ve taking with dinner in the evening.  I’m thinking of continuing to take those 2 with dinner and add in the rifampin 3 hours later before bed. 
I’m wondering if anyone uses this method and if not, why not. What would be a better alternative? Thanks. 

Currently I have a collapsed middle right lobe. Doctor wants to do a scope to clean out the lobe and hopefully it will reinflate. 
Any suggestions?

🌞 Good morning, BronchandNTM360 crew! Hope you got a little chance to kick back and recharge before the week kicks in. Some places are finally getting a break from the heat (thank goodness!) -- here’s hoping it means easier breathing and a little more comfort.

Let’s ease into the week with a smile -- it doesn’t solve everything, but it sure helps make the days feel lighter. 😉 Wishing you steady breaths, brighter moments, and a smoother week ahead. 💙 

Hello! Do you feel equipped with the “ language” of infection control? 
Below is an article on Infection Control Basics, including the “ terms to know”, from the CDC: https://www.cdc.gov/infection-control/about/index.html#cdc_disease_basics_risk-terms-to-know
Please let us know if you have any questions. 

My 1st sputum sample came back negative. I will take the win. I personally don't think it was a great sample but I will take the win! 

💙 Today, we just want to pause and say how grateful we are for this incredible community. Whether you share your story, jump into conversations, quietly stop by to read, or even watch from a distance without ever joining -- you are an important part of BronchandNTM360social!

Every visit, every post, and every bit of knowledge passed along helps someone live better and breathe a little easier. That ripple effect reaches beyond our members to family, friends, caregivers, and anyone looking to learn more about bronchiectasis and NTM.

So, thank you -- to our active members, our extended community, and even those who learn silently. You remind us every day why connection, support, and shared understanding matter so much. 🌟

💙 Today, we just want to pause and say how grateful we are for this incredible community. Whether you share your story, jump into conversations, quietly stop by to read, or even watch from a distance without ever joining -- you are an important part of BronchandNTM360!

Every visit, every post, and every bit of knowledge passed along helps someone live better and breathe a little easier. That ripple effect reaches beyond our members to family, friends, caregivers, and anyone looking to learn more about bronchiectasis and NTM.

So, thank you -- to our active members, our extended community, and even those who learn silently. You remind us every day why connection, support, and shared understanding matter so much. 🌟

Hello! Sepsis is the body’s extreme response to an infection and can be life threatening. Below is an informational handout from the CDC on the basics of sepsis. Please review this and share with family and friends. Being aware of the symptoms gives one a head start in getting the right treatment as soon as possible: https://www.cdc.gov/sepsis/media/pdfs/Consumer-fact-sheet-protect-yourself-and-your-family-P.pdf

Hello Everyone, new to the group. 


Short background: I was diagnosed with BE in 2012 and until June of this year my diagnosis was "mild without complication."  Suddenly while traveling in June, got so sick and when returning home had chest X-ray and CT and seems to now be all through my lungs.  So far, no reason has been established. 


I do not yet feel I have fully recovered from what ever happened in June, Chronic cough, off and on pleurisy pain, etc.  Maybe these are just features of the diseases and something that will never go away? I just do not know enough to know what to expect. 


 I am booked for a river cruise in Sept and I am terrified of getting really sick again. If I could get a refund Id cancel.  I have purchased a portable nebulizer and plan to exercise daily using the stairs and body weight exercises. Just not sure how to get over the fear after my last travel experience. My new pulmonologist saw me in June but not to see him again until after my trip. He is not very responsive through the portal. It is easy to feel very alone in this thing. I am glad to find this community. 

🎉 Happy Friday Jr. to all our friends on BronchandNTM360! It’s basically the weekend’s warm-up act—close enough to taste those weekend vibes, but just far enough to remind us we’ve got one more day to go.

Here’s to easier breathing, a little less stress, and something that makes you smile today. 💙
 

Hello! Are you interested in learning more about Infection Control practices? Below is a handout from Ohio State Wexner Medical Center that reviews some common preventative measures: https://www.medschool.lsuhsc.edu/lungcancer/docs/infection%20prevention%20for%20people%20with%20lung%20conditions.pdf

Handwashing is essential for all health care providers. Patients can take infection control preventative measures by handwashing after visiting a health care facility. As the old cliche goes, “ An ounce of prevention is far greater than a pound of cure “. 

Infection control practices became an everyday topic throughout the pandemic. It is important for respiratory patients to continue infection prevention strategies on an ongoing basis . A few tips for when you are visiting a medical facility:
Use antibacterial wipes before and after the clinic visit.
Use paper towels to push elevator buttons, open doors.
Wash your hands for at least 30 seconds-turn off water faucets with a paper towel. Pack some paper towels with you in case the restroom only has the hand dryer fan.
Wearing masks in the waiting room is optional- a personal choice. You don’t know if someone is coughing due to a chronic, non contagious condition or if they have an active infection.
Preventative measures are so much better than the time and energy needed for curative measures. Let us know if you have any questions. 

Have you quit or are you trying to quit smoking, vaping, or both?

The COPD Foundation is working with the Institute for Clinical and Economic Review(ICER) to better understand how smoking and vaping affect daily life and what it's like to seek treatments to quit smoking. You can participate in this project either through a written feedback form or an interview with ICER. Results will be summarized anonymously in a report that will be used to support decisions on drug pricing, access, and affordability.

If you are interested in participating or learning more, please reach out to advocacy@copdfoundation.org
 

🔎 Ever wonder where to start when it comes to Bronchiectasis and NTM? The Learn More section right here on our website is a great place to dig in. It’s like having a roadmap to help you find your way through the questions and challenges that come with these conditions.

A few sections worth exploring:

🫁 What is Bronchiectasis? / What is NTM? – clear explanations to help make sense of the medical jargon

💨 Airway Clearance Techniques – practical how-to’s for keeping airways clearer

💊 Treatment & Medications – understanding the options your care team may talk about

🧡 Tips for Everyday Life – little adjustments that can make a big difference

👥 Caregiver Guidance – support for the people walking alongside you

All you need to do is click “Learn More” at the top of the page and you’ll see the dropdown with these and other sections waiting for you.

It’s a helpful way to learn at your own pace, and a great tool to share with family or caregivers who want to better understand what you’re going through.


Have you checked out any of these yet? Which one do you think we should spotlight more often here in the community?

👋 Have you had a chance to poke around the Learn More tab on our BronchandNTM360 website? It’s kind of a hidden gem that’s loaded with really helpful info!

You can find everything from:

💡 What bronchiectasis and NTM are all about

💨 Different airway clearance techniques

💊 Medications and treatment options explained

🧡 Everyday tips to make life a little easier

It’s a great spot to explore if you’re looking for answers, new ideas, or just want to better understand what you’re dealing with.

👉 Here’s the link if you want to check it out:  https://www.bronchiectasisandntminitiative.org/Learn-More

Have you looked through it yet? I’d love to know what stood out to you most!
 

☀ Happy Monday, everyone! New week, fresh start--and hopefully some easier breathing mixed in there too.

With this heat, staying hydrated is just as important as airway clearance (think of it as giving your lungs their favorite drink 💧). So keep those water bottles close, and maybe treat yourself like the VIP you are--lemon slice, straw, maybe even a fancy cup if you’re feeling it.

And don’t forget: it’s more than okay to say “no.” Whether that’s skipping an outing in the blazing sun, cutting a chore short, or telling your airway clearance device, “Sorry buddy, but not right this second.” Your health always comes first!


Here’s to a week of steady routines, a few laughs, and plenty of breaths that feel a little lighter. 💙

I am new to the website and wondering if anyone has or is going to try Brinsupri?  Will medicare cover it?

I have some questions and need advice on a lot of contradictions with doctors and her bronchiectasis. Do ask ask here? I am new to this community

I am new to this community and happy I found you! I have questions about situations going on with my mom. Do I just dive in and ask??

Breathe easy, BNTM friends--it’s the weekend! 💨

If you’re stuck in extreme temps, remember: hydration is your airway’s best buddy (sorry, coffee--you’re still great, but second place). Keep cool, pace your activities, and don’t be shy about taking extra airway clearance breaks when needed.

Got any clever tricks for staying comfortable and keeping mucus moving in this heat? Share them below - you might just help someone avoid melting and make breathing a little easier! 🧊😅
 

I’m recently diagnosed and trying to learn as much as I can. 
My pulmonologist just said use the nebulizer and see you in 6 months. 
I’m in NC and I feel the humidity makes it worse. I also know this bc I lived on long my whole life and move to California for 10 years and never had sinus infections or coughs , right before moving I had pneumonia and several months after moving to NC I had pneumonia again. Plus multiple sinus infections. I had Covid and things just wouldn’t clear. I’m considering moving to Oregon just for this reason. Huge move. I thought this was our forever home. Do ppl find the climate makes a huge difference?

Hi friends,  talk to my dr about all the throwing up and they switched up how i take my meds. Dbl doses every other day withe the 2 strong antibiotics on separate days. Anybody else do this?.

I am excited and hopeful about the FDA approval of Brensocatib (Brinsupri) today!  Hoping that I will have access to it and get some relief from this disease I have had for over 30 years.

Breaking news. Brensocatib has been approved by the FDA.


https://ktla.com/business/press-releases/cision/20250812AQ42418/fda-approves-brinsupri-brensocatib-as-the-first-and-only-treatment-for-non-cystic-fibrosis-bronchiectasis-a-serious-chronic-lung-disease/

We are pleased to announce that the Alpha-1 Foundation will be co-sponsoring our September workshop and supporting patient travel – and that registration is now live! We are calling on our patient advocacy groups to help get the word out to Alphas – we are prioritizing their presence, whether in DC or virtual.

Shaping the Future of AATD: Patient Perspectives to Drive the Next Decade of Innovation in Alpha-1 Antitrypsin Deficiency
A Workshop Presented by the Alpha-1 Foundation & the Critical Path for Alpha-1 Antitrypsin Deficiency (CPA-1) Consortium
Registration: https://cvent.me/RM8nRl
Monday, Sep 8, 2025 (10:00 a.m. to 3:30 p.m.)
Washington Marriott at Metro Center, Washington DC
C-Path CGIC Room Block available until 8/18/25 

We are pleased to announce that the Alpha-1 Foundation will be co-sponsoring our September workshop and supporting patient travel – and that registration is now live! We are calling on our patient advocacy groups to help get the word out to Alphas – we are prioritizing their presence, whether in DC or virtual.

Shaping the Future of AATD: Patient Perspectives to Drive the Next Decade of Innovation in Alpha-1 Antitrypsin Deficiency
A Workshop Presented by the Alpha-1 Foundation & the Critical Path for Alpha-1 Antitrypsin Deficiency (CPA-1) Consortium
Registration: https://cvent.me/RM8nRl
Monday, Sep 8, 2025 (10:00 a.m. to 3:30 p.m.)
Washington Marriott at Metro Center, Washington DC

C-Path CGIC Room Block available until 8/18/25

We are pleased to announce that the Alpha-1 Foundation will be co-sponsoring our September workshop and supporting patient travel – and that registration is now live! We are calling on our patient advocacy groups to help get the word out to Alphas – we are prioritizing their presence, whether in DC or virtual.

Shaping the Future of AATD: Patient Perspectives to Drive the Next Decade of Innovation in Alpha-1 Antitrypsin Deficiency
A Workshop Presented by the Alpha-1 Foundation & the Critical Path for Alpha-1 Antitrypsin Deficiency (CPA-1) Consortium
Registration: https://cvent.me/RM8nRl
Monday, Sep 8, 2025 (10:00 a.m. to 3:30 p.m.)
Washington Marriott at Metro Center, Washington DC

C-Path CGIC Room Block available until 8/18/25

According to U.S News & World Report, NYU Langone is the #1 hospital in the USA for adult pulmonology and lung surgery. Mayo Clinic Rochester is #2, and Cleveland Clinic is #6.

https://respiratory-therapy.com/public-health/healthcare-policy/general-healthcare/nyu-langone-cincinnati-childrens-best-pulmonology-hospitals/

Hello! Below is an article on Insmed’s drug Brensocatib , which is being reviewed tomorrow by the FDA for market approval.  The article describes how this drug can improve the quality of life for patients: https://today.uconn.edu/2025/04/new-drug-shows-promise-for-treating-bronchiectasis/

☀ Good morning and happy Sunday, friends!

I hope your day’s starting with something good -- maybe a cup of coffee that hits just right, your favorite pet curled up nearby, or simply the joy of not having an alarm blaring in your ear.

Sundays can be a great “reset day” for those of us living with bronchiectasis or NTM. That might mean taking time for airway clearance without rushing, sipping plenty of water (or tea!) to stay hydrated, and giving your body the rest it’s been asking for all week. A little fresh air if the weather and air quality allow, a gentle stretch, or even planning a simple, nourishing meal can go a long way.

And of course -- find something to laugh about. Humor really is a kind of airway clearance for the soul. (Bonus points if your laugh makes the dog tilt their head in confusion.)

Here’s to easier breathing, lighter hearts, and enjoying the little victories today. 💛

☀ Good morning and happy Sunday, friends!


I hope your day’s starting with something that makes you smile — maybe a warm cup of coffee, a wagging tail, or the pure joy of not having to set an alarm.


Sundays are the perfect time to slow things down, take a few deep, gentle breaths, and maybe find a laugh in the little stuff. (Like realizing you’ve been wearing mismatched socks all morning… and deciding it’s a bold fashion statement!)


Here’s to easier breathing, keeping up with airway clearance without rushing, and giving yourself permission to rest a little extra today. 💛

Hello! It will be an exciting, interesting week ahead for Insmed as the FDA will be reviewing Brensocatib, on August 12th. Brensocatib will be the first drug for Bronchiectasis when the approval process is completed . Bronchiectasis is finally getting increased awareness, research leading to the development of more drug/ therapies. The article below reviews the process: https://pharmaphorum.com/news/fda-starts-review-first-bronchiectasis-drug-candidate

Patients, Phages, and Progress: August 11th

Phage therapy is an emerging treatment that uses bacteriophages—viruses that infect and kill bacteria—to target drug-resistant infections, including nontuberculous mycobacteria (NTM) lung disease. While still considered experimental, early case studies have shown promise in using phages to treat difficult-to-manage NTM infections, especially in patients who don’t respond well to antibiotics.Discover how phage therapy could transform NTM treatment, with a look at personalized care models and what’s ahead for patients and providers.

Register now at https://lp.constantcontactpages.com/ev/reg/dmuqzst

Hello everyone! 

Our next BronchandNTM360social Coffee Break will be Wednesday, August 13, 2025 @ 3pm EDT.

On our upcoming Coffee Break, Dr. Pamela McShane will join us to discuss airway clearance.

Dr. McShane is a pulmonologist and lung health expert who is returning to work at the National Institutes of Health (NIH) with the National Heart, Lung, and Blood Institute (NHLBI).

Dr. McShane produced an excellent airway clearance webinar last year cosponsored by NTMir and Running On Air as part of World Bronchiectasis Day that we encourage you to watch prior to our August meeting.

We will start our discussion based on the key points Dr McShane made in the video.

Airway Clearance by Dr. Pamela McShane
https://www.youtube.com/watch?v=VEYK67nld_o

Coping with Airway Mucus
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here: 
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration 


Looking forward to seeing you all!

Hello! Below is a more technical article from the National Library of Medicine, which includes an overview of NTM and the most common species of NTM. Let us know if you have any specific questions: https://pmc.ncbi.nlm.nih.gov/articles/PMC11687458/

The COPD Foundation and two other charitable organizations sent me a reminder that August is Make a Will Month, so perhaps I should get that done. Possible first line: "I, Mars Rocket, being of unsound mind and a wonky body...." Here's the link from the COPD Foundation.
https://www.freewill.com/copdfoundation?

Celebrating John Linnell

We’d like to take a moment to remember someone who made this world--and our community--a whole lot brighter: our friend and longtime advocate, John Linnell.

John wasn’t just a powerhouse in the world of COPD advocacy--he was the kind of person who could light up a room with a story, a quick joke, or that signature grin. Diagnosed with COPD in 2005, he took that challenge and turned it into a mission: to make sure no one living with this disease ever felt alone or unheard.

And he didn’t just show up--he showed out.
John served on boards like the U.S. COPD Coalition, EFFORTS, and Right2Breathe, was a State Captain for the COPD Foundation, worked on research teams from Johns Hopkins to the University of Illinois Chicago, and even reviewed research proposals for the Department of Defense. Wherever there was a seat at the table, John pulled up a chair and brought the patient voice with him.

But beyond the titles and accomplishments, John was a storyteller, a people person, and someone who just made things better. He could make you laugh when you needed it most, and somehow always knew the exact right thing to say.

He loved cooking, traveling, and spending time with his sweet wife, Barb. The two of them shared a beautiful bond that was easy to see and even easier to admire. And if John had the chance to be on a cruise? He was all in. So while we’re missing him deeply, we like to think he’s sailing off into the sunset--coffee in hand, cracking jokes, and making new friends on the most beautiful cruise of all.

John, thank you for everything you gave--to the community, to advocacy, and to all of us lucky enough to know you. We’ll carry your light forward and keep your memory close.

Bon voyage, friend. You are deeply missed and forever remembered!

Hello! Air quality alerts, high humidity with high heat, high humidity with lower temperatures, dew points, etc. can lead an individual with respiratory issues to continually attempt to interpret the weather report and question if today will be a good day for me to be out and about.  The link below is an article about the Eight things you should know about the numbers that measure bad air quality: https://apple.news/A2uodtK8zT8qsl9ZTqOSsuw
This article should assist in lessening the confusion one may have after listening to the different information on tv weather forecasts and checking the weather forecast on your cellphones. Please let us know if you have any questions.

💧Hydration = Airway Clearance’s Best Friend💧

Let’s face it--mucus doesn’t move itself. 😅
That’s where hydration comes in. Staying well-hydrated helps thin mucus, making it easier to clear (yep, even during those not-so-glamorous airway clearance sessions).

The COPD Foundation reminds us that water supports better lung function and helps prevent mucus from becoming thick and sticky. And over at National Jewish Health, they’ve got a helpful reminder that your heart loves hydration too--dehydration can make your heart work harder, especially in the heat.

A few simple tips to stay ahead of the mucus monster:
🚰 Sip water all day--don’t wait until you're thirsty
🍉 Snack on hydrating fruits like watermelon and citrus
🍋 Add a splash of flavor with lemon, cucumber, or mint
☕ Cut back on caffeine and alcohol when you can

Whether you’re doing your airway clearance, out in the heat, or just trying to feel a little better today--water’s got your back.

Got a favorite hydration trick or routine? Share it below--we’re always up for a good tip (or a fun water bottle story). 💙
 

Hello! A webinar entitled, Patients, Phages and Progress will be held next Monday, August 11th, in honor of World NTM Awareness Day. You can register with the link below: https://lp.constantcontactpages.com/ev/reg/dmuqzst

NTM was in USA Today- it is great to finally see increasing awareness in the media on NTM! We are making progress, and are at a turning point for NTM lung disease. https://www.usatoday.com/story/special/contributor-content/2025/08/04/the-lung-disease-most-americans-dont-know-theyre-at-risk-for/85445600007/