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Paula_MAC-2007
@Paula_MAC2007

Posts: 131
Joined: Mar 24, 2013

2017 NTM & Bronchiectasis Physician/Patient Conference

Posted by @Paula_MAC2007, Feb 15, 2017

From NTM Info & Research, Inc.

2017 NTM & Bronchiectasis Physician/Patient Conference

Join us at a day-long CME-accredited conference on nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, on Friday, May 19, 2017 at Georgetown University in Washington, D.C.

Sessions will cover a range of important topics on these two diseases taught by key opinion leaders from around the world, and the day will also feature Patient and Industry Panel Discussions.

Registration is FREE and breakfast and lunch will be provided. Space is limited so register early to reserve your spot!

Click here to register for the conference!

http://campaign.r20.constantcontact.com/render?m=1101618704496&ca=a3bfadb1-a1c9-412a-9f55-a293ef414355

Click here to view the agenda and faculty.

https://www.ntminfo.org/images/media/News/conference_flyer.pdf

REPLY

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

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Windwalker….I have watched NJH NTM workshop from 2016 about 3 times ….and I attended it in person and I am still learning things…someone …an educator once commented we learn in layers…very true! Tdrell

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

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Terri M and Terri – this is Pamela – I can not recall from the conference what meds they were, but I am sure the video of the conference will refresh our memories – it will be an important resource. Pamela

Liked by tdrell

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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Hi Paula, just checking in with you. I had been feeling great lately,
except that today was a very low energy day, more so than usual. How about you?
How are you doing?  – Terri M.
 

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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Hello Terri – @windwalker ,
You asked how I was — I’m quite busy, as usual . . . almost always have a lot going on. Went to Hatha/Mixed Yoga today, which was fabulous for my breathing. Then back to developing database systems and a website. I do feel fabulous these days. So glad you, too, are feeling great lately, although I hear ‘ya about the low energy day! For me, low energy strikes when I lease expect it, and then I’ve got to really pace myself so I don’t run out of gas. It’s difficult, ’cause people don’t understand.

I do think the sunshine and summer weather (with low humidity) makes people feel better. I’m still trying to digest all the information from the Georgetown Univ NTM conference in May. Would sure like to get a national registry going in the USA… Oregon and a few other states recently made it mandatory to report on NTM. England is way ahead of us, I believe.

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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I’m jumping in here, have not rsvp’d here, mostly with Katemn on another site. I had symptoms of MAC since think 2009, but wasn’t diagnosed until 2011, got the old asthma diagnosis. Was treated with the big three for 5 years and have been culture free for 2 years, off meds one year.
The reason for this diatribe is your mention of a registry. In my vast reading I read about the COPD Registry it has included
MAC/?NTM patients. While in Midwest was SOO fortunate to get an appointment to with Dr. Aksamit and they enrolled me in their data base. I have another rare disorder, and they have formed a strong registry. The disorder is fibromuscular dysplasia, quite interesting (fmdsa.org). A patient, Pam Mace, is the executive director, and it has become an international organization. Have other cardiac issue so don’t have the energy to pursue further information re starting a registry, but the executive director can be reached at the site if anyone has the energy.
Love to all, Linda

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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PS:. The point of this”diatribe” is agreeing that this should be a reportable disease as you said. I write to the CDC but doubt anyone reads my messages.
Hugs

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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@sherry72,
When I asked the question at the NTM conference about how do we get this to be a reportable disease in each State of the USA, I got the impression the docs seemed to think it was too difficult and not do-able. One doctor (Dr. Aksamit?) said to contact our state governor and legislatures. However, they did say that Oregon and a few other states recently got mandatory reporting. Another fabulous point was made at the beginning of the conference that NTM & bronchiectasis has gotten the attention of the ??? I don’t recall if it is the CDC or NIH, so I hesitated to mention up. But the doctors at the conference seemed quite excited about this, since it may mean more research being put into NTM.

@Paula_MAC2007

@windwalker, I echo your comment that you don’t think your husband “…ever understood the severity and suseptibility and
fatigue that this disease entails.” Straight from my mouth! For me, the ongoing fatigue has been the most debilitating, especially for a high energy person.

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Hi Paula, so glad you started yoga. It is very beneficial. You are right,
many people don't understand the major fatigue we experience. It does hit
unexpectedly and makes it hard to plan things. I had a new friend that I had to
cancel out on several times, she gave up on me and thinks I am a flake. Oh
well……
 

@colleenyoung

Hi @Paula_MAC2007, @dalec, @windwalker, @tdrell and @pamelasc1,

We’re so anxious to hear your feedback about the conference. What was your most significant moment? What did you learn? Did you meet each other?

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@windwalker Terri, thank you for all the good information! Hugs! Katherine

VIDEOs of the NTM & Bronchiectasis Conference at Georgetown University on May 19, 2017 can now be found on YouTube, in four parts. Here are the links.

AGENDA: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf
WELCOME: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf

PART 01:

PART 02:

PART 03:

PART 04:

Shared files

Conf_Agenda_final (Conf_Agenda_final.pdf)

ODonnellWelcome (ODonnellWelcome.pdf)

@Paula_MAC2007

VIDEOs of the NTM & Bronchiectasis Conference at Georgetown University on May 19, 2017 can now be found on YouTube, in four parts. Here are the links.

AGENDA: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf
WELCOME: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf

PART 01:

PART 02:

PART 03:

PART 04:

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@Paula_MAC2007, Paula, GREAT information .. thank you SOOO much for sharing!! What a group we have!! Hugs! Katherine

@Paula_MAC2007

VIDEOs of the NTM & Bronchiectasis Conference at Georgetown University on May 19, 2017 can now be found on YouTube, in four parts. Here are the links.

AGENDA: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf
WELCOME: https://www.ntminfo.org/images/media/News/ODonnellWelcome.pdf

PART 01:

PART 02:

PART 03:

PART 04:

Jump to this post

@Paula_MAC2007 Thank
you Paula!
 

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