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@pamelasc1

Hello to everyone - I just received this as an email...it addresses one of the recent emails about the need for research. This sounds promising - I did not include the information about funding but of course they need it. Many of you may receive this email as well, but to get more information, I would just go to NTMGene. Pamela

NTM Info & Research
The NTM community has a unique opportunity to be a part of a groundbreaking genetic study, NTMGene.

This project is aimed at helping physicians and researchers better understand the population at risk based on their genetic background and to improve therapies with the future goal of a more personalized medical approach to treatment. NTMGene will study the genetic susceptibility for NTM-related disease and the pharmacogenomics of anti-NTM medications in the U.S.

Meet Dr. Mehdi Mirsaedi, MD, MPH, who has devoted his career to NTM research and is the principal investigator on NTMGene.

Tell us a little about yourself and how you choose your career-path.

I grew up in Iran with a father who had suffered from lung issues which was the catalyst for my many questions about respiratory infections. As early as middle school I was conducting lab experiments in my basement! I graduated from Tehran University of Medical Science and moved to the U.S. in 2006 for my fellowships in infectious diseases and advanced pulmonology. In 2015, I moved to Miami with my wife to concentrate on TB and Non-TB infections.

How have your NTM patients inspired you?

When I was at the University of Illinois-Chicago, I began to see more and more NTM patients. They were often female, older, tall and thin. I couldn't answer their cries of 'Why me?' which inspired me to continue to focus on the mystery of NTM-related disease. Why are some patients more susceptible to this infection? How do we get diagnoses tailored in the right way so therapies can be more effective?

How will NTMGene benefit those with NTM-related disease?

The prevalence of NTM-related disease is on the rise in North America in people older than 50 years of age - and the population is aging. NTM exceeds that of tuberculous but the why, when and how the infections occurs and to which patients remains largely unknown.

NTMGene is the only known study that will focus on the genomics of NTM-related disease on a national level. We need improved diagnosis and therapies but we still do not understand who is at risk. I believe NTMGene will provide a critical puzzle piece in that mystery. Knowing the genetic predisposition and pharmacogenomics will aid in superior treatment for this disease. And, this data will be a unique contribution to NTM science as a whole.

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Replies to "Hello to everyone - I just received this as an email...it addresses one of the recent..."

How do I sign up?

Thank you so much, Everyone for all this info. In addition, so grateful to know this Doctor is researching NTM, this is very encouraging for us. Hugs to All-Filis

@pamelasc1, Pamela, I signed up and donated .. IF this can help sure would be happy! Hugs to all! Katherine
https://www.ntminfo.org/