NTM Info & Research (NTMir) announces that it has received a determination letter from the IRS that it qualifies for 501(c)(3) not-for-profit status. Not-for-profit status will allow NTMir to significantly expand the scope of its activities on a much more aggressive basis.

Priority information and news release for NTM Info & Research (NTMir)
(Dedicated to better outcomes for patients with pulmonary nontuberculous mycobacterial disease.)

April 18, 2005
Miami, FL

NTMir Receives Not-For-Profit Status

NTM Info & Research (NTMir) announces that it has received a determination letter from the IRS that it qualifies for 501(c)(3) not-for-profit status. Not-for-profit status will allow NTMir to significantly expand the scope of its activities on a much more aggressive basis.

History

NTMir was founded by Fern Leitman, an NTM patient, and her husband Philip as they sought ways to help other patients afflicted with these infections. Numerous patients, physicians and supporters are involved and are contributing to NTMir's efforts.

Board of Directors

We are pleased to announce the appointment of the initial members of the board of directors of NTMir. Additional nominations are welcome.

Mary Allyn
NTM Patient
Sarasota, Florida

Timothy R. Aksimat,
M.D. Mayo Clinic
Rochester, Minnesota

David Ashkin,
M.D. A.G. Holley Hospital
Lantana, Florida

Kevin Fennelly,
M.D. University of Medicine & Dentistry of New Jersey
Newark, New Jersey

David Griffith, M.D.
University of Texas
Tyler, Texas

Michael D. Iseman,
M.D. National Jewish Medical & Research
Denver, Colorado

Fern Leitman
NTM Patient
Miami, Florida

Philip Leitman
Philip Leitman, Inc.
President Miami, Florida

Medical & Scientific Advisory Committee (MASAC)

Dr. Charles Daley (National Jewish, Denver) has agreed to act as the chair of NTMir's Medical and Scientific Advisory Committee. A number of leading physicians and researchers have and will be asked to join the MASAC. Additional inquiries and nominations are welcome. The names and affiliations of MASAC members will be announced in the near future.

Public Policy and Advocacy; Accomplishments and Pending Actions

As a result of NTMir's efforts last fall, Congress has focused on our collective concerns about NTM. We succeeded in having language placed in a Senate bill and NTMir is having meetings to follow up on the results of that language.

A concerned member of the House of Representatives who has a strong health issues record is sponsoring NTMir through a language amendment in the current Labor, Health & Human Services Appropriations bill. The language will request that the Centers for Disease Control and the National Institutes of Health look at various issues regarding NTM epidemiology, research and treatments.

NTMir has also been asked to provide personal testimony at the Labor, Health and Human Services Appropriations Subcommittee hearings during April 2005. This will provide us an opportunity to influence public health decisions since the subcommittee has financial jurisdiction over public health policy through its funding of the Centers for Disease Control and National Institutes of Health.

Medical Success

NTMir recently succeeded in securing an agreement between a major pharmaceutical company, the Food and Drug Administration (FDA) and Hansen's Division of HRSA to provide clofazamine, a restricted medicine, to NTM patients who might not otherwise have been able to secure the drug due to worldwide restrictions. The World Health Organization (WHO) has requested these restrictions in order to provide clofazamine only to patients with leprosy. NTM patients, some of whom rely on this drug as other alternatives have failed, will now have these medications available.

For Additional Information

For additional information on NTMir, please contact us at: NTMmail@aol.com.

Please see our website NTMinfo.com for more detailed information.

For other inquiries please contact Miriam O'Day, Senior Director of Public Policy at Miriam.oday@verizon.net or Philip Leitman at: philipleitman@aol.com.