BronchandNTM360social welcomes new member Lindsey Krupansky who joins 4,762 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

We are pleased to announce that the Alpha-1 Foundation will be co-sponsoring our September workshop and supporting patient travel โ€“ and that registration is now live! We are calling on our patient advocacy groups to help get the word out to Alphas โ€“ 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 

3 days ago

Terri29

Terri29

Iโ€™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. 
Iโ€™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 wouldnโ€™t clear. Iโ€™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?

1 day ago

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  • Ksmiles123Welcome to the community. I am so glad you found us. . A six month span seems way too long to see your doctor again when you are experiencing symptoms. The Care Center Network contact information is listed below: NC - UNC Bronchiectasis/NTM Care and Research Center100 Eastowne Drive
    2nd Floor
    Chapel Hill, NC, 27514(984) 974-570311
    I would not rush to move. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone atโ€ฏ(833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us atโ€ฏcontactus@bronchandntm.orgโ€ฏto get more information aboutโ€ฏyour current concerns. Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. 1 day ago
  • marsrocketHi Terri. I'm not sure about climate, but I can testify that a change of environment can make a big difference, for good or for bad. Since moving from my sister's house in a small town to a senior apartment complex in a mid-sized city I have had several infections including two bugs my ID doctor had never dealt with previously. New challenges include living with hundreds of people instead of three people, and smokers and pesticides and herbicides and fumes from the busy road out front. Definitely not lung-friendly. Are you able to spend some time in Oregon before committing to a big move? Also, besides nebulizing, there are several other airway clearance techniques and devices that might be beneficial. Lots of resources on this site. Good luck!20 hours ago
  • das23Welcome Terri29......Yes--High heat and humidity can be an issue for some of us. Extreme cold too. I agree with Katie--6 months is too long to wait when you're struggling. Hang in there. Glad you found us--Lots if help here!!13 hours ago
Jenifer70

Jenifer70

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?.

1 day ago

ChristinaH

ChristinaHvoted on FDA Approves a New Medication for Bronchiectasis

Gave a thumbs up for a blog post!

2 days ago

ChristinaH

ChristinaHcommented onFDA Approves a New Medication for Bronchiectasis

 What an exciting step forward in advancing treatment options for our community! ...

2 days ago

Alyssa Dittner

Alyssa Dittnervoted on FDA Approves a New Medication for Bronchiectasis

Gave a thumbs up for a blog post!

2 days ago

JohnT

JohnTvoted on FDA Approves a New Medication for Bronchiectasis

Gave a thumbs up for a blog post!

2 days ago

Ksmiles123

Ksmiles123commented onFDA Approves a New Medication for Bronchiectasis

 Great , uplifting news on Brinsupri! A note of gratitude to each and every member of the Insmed team for developing this new drug. We are now at a turning point for individuals who have Bronchiectasis. There is light , HOPE at the end of the...

2 days ago

Seawolf

Seawolfvoted on FDA Approves a New Medication for Bronchiectasis

Gave a thumbs up for a blog post!

2 days ago

Susan LR

Susan LR

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.

2 days ago

Delia

Deliavoted on FDA Approves a New Medication for Bronchiectasis

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2 days ago

ChristinaH

ChristinaHadded a new article FDA Approves a New Medication for Bronchiectasis

This post was co-authored by the Bronchiectasis and NTM Association and COPD Foundation Education teams.

What is Bronchiectasis?

Bronchiectasis is a chronic (long-lasting) lung disease that causes the bronchial airways โ€“ the tubes that carry air in and out of the lungs โ€“ to become widened, scarred, and inflamed.1

2 days ago

marsrocket

marsrocket

2 days ago

marsrocket

marsrocket

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/

3 days ago

Ksmiles123

Ksmiles123Hello! Below is an article on Insmedโ€™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/

New Drug Shows Promise for Treating Bronchiectasis - UConn Today

NEJM Publishes New Global Clinical Trial Findings Showing Potential Power of Investigational Medication to Improve Bronchiectasis Patientsโ€™ Quality of Life

4 days ago

360Coach Brandon

360Coach Brandon

โ˜€ Good morning and happy Sunday, friends!

I hope your dayโ€™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 โ€œreset dayโ€ 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 itโ€™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.)

Hereโ€™s to easier breathing, lighter hearts, and enjoying the little victories today. ๐Ÿ’›

5 days ago

Ksmiles123

Ksmiles123Hello! 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

FDA starts review of first bronchiectasis drug candidate

The FDA has started a priority review of Insmed's brensocatib, which is pitching to become the first approved therapy for bronchiectasis in the US.

6 days ago

  • NewestOldest
  • marsrocketThanks, Katie. The last paragraph of the article mentions additional medications that might soon be available, a reason to be hopeful. 


    Other drugs in development for bronchiectasis include Armata Pharmaโ€™s AP-PA02 โ€“ a bacteriophage-based therapy for non-CF bronchiectasis caused by chronic Pseudomonas aeruginosa infections, which recently generated positive phase 2 data in the Tailwind study โ€“ along with Boehringer Ingelheim's cathepsin C Inhibitor BI-1291583 (phase 2), Sanofi's anti-IL-33 antibody itepekimab (phase 2), and Chiesi's human neutrophil elastase inhibitor CHF-633 (phase 1/2)5 days ago
  • Ksmiles123Marsrocket, 
    You are most welcome! I hope that you are getting some relief with your new treatment plan in place. Thank you for posting the other drugs in the pipeline . 5 days ago
BeClearwithBronchiectasis

BeClearwithBronchiectasis

Patients, Phages, and Progress: August 11th

Phage therapy is an emerging treatment that uses bacteriophagesโ€”viruses that infect and kill bacteriaโ€”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 donโ€™t respond well to antibiotics.Discover how phage therapy could transform NTM treatment, with a look at personalized care models and whatโ€™s ahead for patients and providers.

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

1 week ago

360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

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:โ€ฏ
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registrationโ€ฏ


Lookingโ€ฏforward to seeing you all!

1 week ago

Ksmiles123

Ksmiles123Hello! 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/

Nontuberculous Mycobacteriaโ€”Overview

Nontuberculous mycobacteria (NTM) are emerging pathogens that affect both immunocompromised and immunocompetent patients. The development of molecular methods has allowed the characterization of new species and the identification of NTM to the ...

1 week ago

marsrocket

marsrocketThe 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?

Write Your Legal Will Online, Free & Simple | FreeWill

FreeWill lets you make your last will and testament quick, easy, and completely free. It is a simple online legal will maker that helps you compile will forms to print and sign, or to take as a basic will template to an estate planning lawyer. FreeWill is built alongside will making experts.

1 week ago

  • NewestOldest
  • 360Coach Brandon I think Iโ€™d start mine the same way, too! Itโ€™s one of those things that feels heavy to think about--but finishing it is oddly satisfying, like checking off the ultimate grown-up to-do. And hey, itโ€™s one less thing for our families to stress over laterโ€ฆ and one less thing for us to keep avoiding!1 week ago
  • Ksmiles123It is something that is heavy to think about but it needs to be done, and updated as needed over time. 1 week ago
360Coach Brandon

360Coach Brandon Celebrating John Linnell

Weโ€™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 wasnโ€™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 didnโ€™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 weโ€™re missing him deeply, we like to think heโ€™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. Weโ€™ll carry your light forward and keep your memory close.

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

1 week ago

Ksmiles123

Ksmiles123Hello! 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.

1 week ago

360Coach Brandon

360Coach Brandon

๐Ÿ’งHydration = Airway Clearanceโ€™s Best Friend๐Ÿ’ง

Letโ€™s face it--mucus doesnโ€™t move itself. ๐Ÿ˜…
Thatโ€™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, theyโ€™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:
๐Ÿšฐ Sip water all day--donโ€™t wait until you're thirsty
๐Ÿ‰ Snack on hydrating fruits like watermelon and citrus
๐Ÿ‹ Add a splash of flavor with lemon, cucumber, or mint
โ˜• Cut back on caffeine and alcohol when you can

Whether youโ€™re doing your airway clearance, out in the heat, or just trying to feel a little better today--waterโ€™s got your back.

Got a favorite hydration trick or routine? Share it below--weโ€™re always up for a good tip (or a fun water bottle story). ๐Ÿ’™
 

1 week ago

Ksmiles123

Ksmiles123asked the question: How is the air quality in your area today?

Poor air quality can really take a toll on respiratory patients, leading to increased inflammation, wheezing, shortness of breath in some individuals. The link below provides a guide for you to better understand the different air quality flags: …

1 week ago

Ksmiles123

Ksmiles123

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

1 week ago

Ksmiles123

Ksmiles123

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/

1 week ago

Alyssa Dittner

Alyssa DittnerIn celebration of World NTM Day, we are excited to share a special podcast episode!

We explore traveling with NTM lung disease, featuring advice from John Torrence, a seasoned traveler and patient ambassador, and Nancy, who is eager to explore the world again after her NTM diagnosis. They share valuable tips on travel planning, water safety, destination choices, and overcoming fears. Whether you're planning a quick trip or a longer adventure, gain practical advice to travel confidently and safely.
 
Listen here: https://www.podbean.com/ep/pb-dh5i7-191896b

Episode 11 : Overcoming Challenges and Embracing Adventure: NTM Travel Tips

To view/listen to this episode on YouTube, click here. In this special episode in celebration of World NTM Day, we explore traveling with NTM lung disease. Join us as we speak with John Torrence, a seasoned traveler and patient ambassador for Bronchiectasis and NTM Association, and Nancy, who is …

1 week ago

360Coach Brandon

360Coach Brandon

๐ŸŒ Today is World NTM Awareness Day! ๐Ÿ’™

Here in our Bronchiectasis and NTM 360social community, every day is about lifting each other up, sharing our journeys, and advocating for better care. But today, we shine an even brighter light on NTM lung disease--because awareness can lead to earlier diagnosis, better treatment, and stronger support.

โœ… Did you know?
๐Ÿ”น Nontuberculous mycobacterial (NTM) lung disease is on the rise, especially in older adults and those with chronic lung conditions like bronchiectasis.
๐Ÿ”น An estimated 86,000+ people in the U.S. are living with NTM lung disease--and many more may go undiagnosed.
๐Ÿ”น People with bronchiectasis are 37 times more likely to develop NTM than the general population.
๐Ÿ”น Yet despite this, awareness remains low--and thatโ€™s something weโ€™re working hard to change!

Whether youโ€™re living with NTM, supporting someone who is, or simply lending your voice--youโ€™re helping drive change. Letโ€™s keep raising awareness, asking questions, sharing stories, and pushing for a better future.


๐Ÿ’ฌDrop a comment to tell us how you're marking the day or give a shoutout to someone who inspires you!

Hereโ€™s to all of us--standing strong, breathing better, and making our voices heard. ๐Ÿ’›

1 week ago

  • NewestOldest
  • Ksmiles123We have come along way over the past decade with increasing awareness on NTM! We still have a way to go- any contribution in increasing awareness is greatly appreciated. 
    I am wearing my NTM tee shirt today:).1 week ago
  • marsrocketThere are times I wish I was blissfully ignorant about NTMs, but that wasn't my fate. Since 2019 four different NTMs have appeared in sputum samples, m. fortuitum, m. aquaticum, and MAC and MAI. Only the extremely rare aquaticum wasn't treated, in part due to the lack of clinical data. Hopefully in the near future there will be treatment options other than antibiotics, such as phage therapy, and medications that interfere with biofilms or quorum sensing, how bugs communicate with each other, which is key to developing resistance to antibiotics. Happy awareness day!1 week ago
  • Ksmiles123I am hoping and praying ๐Ÿ™๐Ÿฝ for similar wishes!! We desperately need other treatments than long term antibiotics. Happy NTM Awareness Day back to you! 1 week ago
Ksmiles123

Ksmiles123

August 4th,  NTM Awareness Day
NTM Info & Research recognizes the continuing increase of cases and the need for information and resources for those affected by this disease.With World NTM Awareness Day, we aim to raise awareness on the resources available to patients and increase early testing to avoid delayed diagnosis.
( NTM Information &Research) 
Please assist our community by increasing public awareness on NTM. Greater awareness increases funding for research, and the development of new medications and treatments. You can share educational materials on this site with health care professionals, your local representatives, friends and family.
You can also get involved in the Impact Advocacy program held in Washington, D.C. in March , 2026. Please email us at contactus@bronchandntm.org if you are interested.
NTM Awareness Day gives us a gift of HOPE that more is being done each and every day for this rare disease. Enjoy this special day! 

1 week ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.

 
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