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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@Paula_MAC2007

Hello everyone,

News about NTM is getting out there. I meant to let you know about this a few weeks ago . . . Eric Chase swims for NTM cause.

Manhattan Beach resident Eric Chase has been swimming in the "Dwight Crum Pier to Pier" swim between Manhattan and Hermosa Beach for 20 years. But this year, his athletic endeavor has new meaning. Chase is swimming for a cause: to raise money for a close friend suffering from Nontuberculous Mycobacterial Lung Disease (NTM) and for the thousands of other patients impacted.

source: http://tbrnews.com/news/manhattan_beach/manhattan-beach-resident-swimming-for-ntm-cure/article_6f43f6c8-59ba-11e6-bb1a-67df3d345353.html

Also see this at NTM Info & Research, Inc. - https://www.ntminfo.org/top-news/articles/current-news/item/719-eric-chase-swim-results

I met with my pulmonologist last week, and let him know about 2 blogs to which I belong. And that many of us with NTM or MAC are trying to get the word out to all our docs that we would like NEW RESEARCH, BETTER MEDS -- PREFERABLY INHALABLE DRUGS! I had literature I took him that I posted here. He went to medical school in Michigan and never learned about NTM or MAC since it was not known there; came to SE Wisconsin where he immediately learned the disease is a 'hot spot' here. We discussed 'why' here and not Chicago! He was not aware of the US Food & Drug Admin meeting with NTM patients or caregivers, soliciting their experiences. He asked for the link with the April published results.

Trying to spread the word . . . Paula

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Replies to "Hello everyone, News about NTM is getting out there. I meant to let you know about..."

Paula what is the name of the Dr you go to in SE Wisconsin terrid?

@tdrell, you asked the name of the pulmonologist I go to in SE Wisconsin - it's Dr. Lipchick. But there are several other excellent pulmonologists quite familiar with NTM or MAC at the teaching hospital where he practices. I say this because it is difficult to get an appointment with him.