NTMir ParticipACTION 2008
March 3 & 4 , 2008
The Capitol Hill Club - Washington, D.C.
NTMir's 3rd Annual Education and Advocacy Event
New! WHAT WE ASKED FOR
NTM Disease Language Request
Pulmonary Rehab Legislation
Home Infusion Legislation
Click for Congressional Meetings
PHYSICIANS THAT ATTENDED
Dr. Timothy Aksamit, Mayo Clinic Dr. Steven Holland, National Institutes of Health
Dr. Gwen Huitt, National Jewish Dr. Michael Iseman, National Jewish
Dr. David Kamelhar, New York University Dr. Jonathan Zenilman, Johns Hopkins
Dr. John Mitchell, University of Colorado Dr. Anne O'Donnell, Georgetown University
Dr. Kenneth Olivier, National Institutes of Health Dr. Lisa Saiman, Columbia University
Dr. Matthias Salathe, University of Miami Dr. Maunank Shah, Johns Hopkins
Dr. Richard Wallace, University of Texas, Tyler
AGENDA
Sunday
6:30 pm Welcome Dinner hosted by Fern and Philip Leitman
Gordon Biersch
900 F Street, N.W.
Monday
Location: The Capitol Hill Club
Educational Presentations included:
The Power of a Partnership with the American Lung Association
Paul Billings
Vice President, National Policy & Advocacy
American Lung Association
The Medicare Home Infusion Therapy Coverage Act
John Magnuson
Vice President Legislative Affairs
National Home Infusion Association
Surgery and the Management of Pulmonary NTM Disease
John Mitchell, M.D.
Chief, General Thoracic Surgery
University of Colorado at Denver
NTM Disease and Genetics: The Possible Links to
Marfan's, Alpha-1, CF, and Ciliary Dyskinesia
Kenneth Olivier, M.D.
National Institute of Allergy and Infectious Disease
National Institutes of Health
Washington, D.C.
Lung disease characterized by peripheral nodules and dilated airways has been reported with increasing frequency in association with NTM in post menopausal women. Although many of these women have had no known preceding lung disease prior to onset of symptoms in their adult lives, there are body habitus features, physiologic abnormalities, genetic variations, and clustering within families that strongly suggest a link to known genetic diseases affecting airways clearance or local airway surface defenses. This talk will focus on ongoing research attempting to explain the unique susceptibility to NTM among certain individuals.
Nutrition for NTM Patients
Carrie Gleeksman, M.S., R.D.
National Jewish Medical & Research Center
Denver, Colorado
A thorough review of issues relating to nutrition and NTM. Topics include common nutrition issues, multivitamins and other supplements, hydration, food-drug interactions, and herbal and alternative therapies.
Questions and Answers - Ask the Experts
Elizabeth Glaeser, Moderator
Member, NTMir Board of Directors
Physicians from renowned medical institutions will answer pre-submitted patient questions and questions posed by attendees.
The Legislative Process and How to Talk to Congress Members
Miriam O'Day, Senior Director Public Policy
Tuesday
All day: Patients met with members of Congress and staff
Updated March 7, 2008
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