NTM Info & Research, Inc.

aka NTMir   |   Palmetto Bay, FL   |  http://www.ntminfo.org

Mission

NTMir's mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

Ruling year info

2005

President

Amy Leitman

Main address

14411 South Dixie Highway Suite 205

Palmetto Bay, FL 33176 USA

Show more contact info

EIN

20-0156638

NTEE code info

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (H01)

Lung (G45)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

There is not a cure for NTM. NTM is a rare disease often not getting the attention it deserves even with an 8% per year increase in cases. We need more physicians trained in sputum culturing and diagnosis as well as the need and understanding in working with NTM Centers of Excellence. We need more Centers of Excellence.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Rapid Information Pilot Studies (RIPS)

Rapid Information Pilot Studies (RIPS)TM
RIPS is NTMir's research program. We have funded three research programs at a total of $130,000 thus far. More research will be funded. For more information please visit www.ntminfo.org.

Population(s) Served
Adults

Joint Research with
ATS and ALA NTMir has entered into joint research funding agreements with the
American Thoracic Society and the American Lung Association. Each organization
will match our funds, for a total of $280,000 in funding over three years. We
need to raise $140,000 in the next three years.

Population(s) Served
Adults

NTMir holds annual patient/physician meetings.  Past meetings have been held in Washington, D.C., Toronto, and San Diego.  The 2010 meeting will be in New Orleans and the 2011 meeting will be in Denver.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of meetings with policymakers or candidates

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Patient/Physician Meetings

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Lobbying in DC in October, Our conference in May, CHEST, ATS and ID week conferences

Number of individuals attending briefings and presentations

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We intend to continue lobbying the government for funding for research and drug development to find more effective treatments with less side effects as well as ultimately finding a cure. Physician Outreach and education so that we have more Pulmonary, Infectious Disease and General Practitioners who can diagnose NTM accurately and with efficiency. Identifying NTM properly allows for a more positive outcome in care and less antibiotic resistance. Continue Patient outreach with mental care resources, nutrition resources, support group resources and physician referrals.

Fundraising with Industry sponsors in order to push our agenda on the hill with lobbyist. Reach out to Foundations for support.

We continually approach industry, physicians and patients to further understand the needs and where to push for the solutions. Our annual patient/CME physician conference keeps us on the map and relative to our space.

Our patient outreach program has allowed us to have one of the most complete physician referral lists. As new therapies become available we continue to supply patients with the information. In addition, we supply the gateway to new to studies, new drugs and surveys. Educating Physicians and allied healthcare provider communities on symptoms, diagnosis and management of NTM and bronchiectasis becomes even more essential. The push to understand that this complex disease requires addressing both the infection and the underlying lung disease itself. We will continue to address gaps in these areas of knowledge, properly demonstrating this dual disease state and providing a comprehensive overview of the steps necessary to properly help the patient, from diagnostics to managing the myriad side effects of treatments.

Financials

NTM Info & Research, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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NTM Info & Research, Inc.

Board of directors
as of 12/16/2021
SOURCE: Self-reported by organization
Board chair

Connie Kazanjian

Philip Leitman

No Affiliation

Connie Kazanjian

No Affiliation

Timothy Aksamit, M.D.

Mayo Clinic, Rochester, MN

Elizabeth Glaeser

No Affiliation

David Ashkin, M.D.

Florida State TB Controller

Michael Iseman, M.D.

National Jewish Medical & Research Center, Denver, CO

David Griffith, M.D.

University of Texas, Tyler

Richard Wallace, M.D.

University of Texas Tyler

Jim Zimny

Debbie Breslawsky

Candance Lerman, Esq

Brandon Mitchel

Kevin Fennelly, MD

National Institutes of Health

Organizational demographics

SOURCE: Self-reported; last updated 12/16/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data