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MUSC Patient and Family Virtual Conference on September 9th
Before you get totally into holiday weekend mode, let me alert you to a patient conference. The conference called “2022 Update on NTM Infections Patient and Family Session” will be sponsored by the Medical University of South Carolina (MUSC) on Friday, September 9th. It will be both an in-person and virtual conference and they have extended the sign-up period to next Wednesday the 7th. Best of all, it will be led by the highly regarded Dr Patrick Flume and it is FREE!!!
Dr Flume is an expert in Cystic Fibrosis, Bronchiectasis and NTM Lung Disease. He is frequently cited for suggesting that bronchiectasis is not just a cycle of airway dysfunction, inflammation, infection and structural damage, but rather a vortex. His model acknowledges the interconnectedness of all the characteristics of BE and the complexity of the disease.
The MUSC NTM team will discuss different aspects of care ranging from diagnostic testing, treatment and monitoring, and review opportunities for advocacy and clinical research. The MUSC NTM team consists of pulmonary and infectious disease clinicians, nursing, respiratory therapy, pharmacy and psychology who work together to address the needs of those affected by NTM infections. (paraphased from the MUSC website)
To sign up, go to https://bit.ly/3Q5oBk9 and select the “online registration portal” on the left. You will have to register as a medical professional so select “Other” and “Patient Advocacy” as your specialty. (I confirmed this with the office overseeing registration)
This event is not expected to be recorded.
Thank you To bronchi-sister L from South Carolina for letting us know about this fantastic learning opportunity!
Enjoy the Labor Day weekend and reward yourself for all the hard work you put into managing your disease.
Best,
Linda Esposito, MPH
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I have been following phage therapy for years and it’s exciting to see it getting more attention. People used to go to Georgia near Russia to get phages. Now there is a large phage bank in Pittsburgh. The research seems to mostly address m. abscessus and Pseudomonas.
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2 ReactionsHi Linda - you are right about where the current phage research is focusing. My guess is that is because those two are much larger issues than just among the Bronch, COPD & CF populations. Recalcitrant Pseudomonas and m. abscessus are also issues for wound infections and hospital acquired infections.
But the development for those opens the door...
Sue
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1 ReactionAs promised, here are the links to the conference last Friday. What is lovely is that they have broken it down by presenter; even better, you can see the length of each segment. That means you and I can watch the videos one at a time, as our schedules allow.
Here are the links:
I highly recommend this introduction, where he discusses the issue of when they treat NTM, which may be different than you imagine.
Defining NTM lung disease, Patrick Flume, M.D.
Mycobacteria & the Environment, Susan Dorman, M.D.
Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D.
Antibiotic Treatment of NTM Lung Disease, Patrick Flume, M.D.
Drug Toxicity and Monitoring, Wendy Bullington, PharmD
Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD
What is in the Drug Pipeline? Susan Dorman, M.D.
Patient Advocacy, Sue Gray, RN
Panel Q&A
Patient Perspectives, Faculty Panel
Sue
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5 ReactionsHERE ARE THE RECORDINGS!!
Patient and Family Session, Friday, September 9
Defining NTM lung disease, Patrick Flume, M.D.
Mycobacteria & the Environment, Susan Dorman, M.D.
Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D.
Antibiotic Treatment of NTM Lung Disease, Patrick Flume, M.D.
Drug Toxicity and Monitoring, Wendy Bullington, PharmD
Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD
What is in the Drug Pipeline? Susan Dorman, M.D.
Patient Advocacy, Sue Gray, RN
Panel Q&A
Patient Perspectives, Faculty Panel
Enjoy!
Linda Esposito
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8 ReactionsSue:
Thank you for the wonderful gift of
how to connect to the recorded events of the Kiawah conference.
Both of us have listened intently and I plan to do so several times.
I am so appreciative that you took the time to share this since I so foolishly thought it didn’t cover Bronchiectasis. Was I wrong!
I hope to soon be able to contribute in such helpful ways.
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3 ReactionsHi Sue, I was listening to the conf with the links you posted of each video and was disrupted. Not sure if I accidentally deleted the entire section. Can you please send me your last post on the conference. Thank you in advance.
Thank you, Sue, for the links you sent. Would you by any chance, have contact info of Dr. Dornan, who spoke on the environment and NTM?
Thanks
Susan Dorman MD
843-792-4541
dorman@musc.edu
Thank you so much, Sue.
Thank you all so much. The info was very informative. I did get a little apprehensive with the discussion of the meds as I assumed the Ariykace was developed specifically for MAC.....
Thank you all for your invaluable information