Companies Shine Patient Perspective on Lung Diseases

Three exhibitors will share unique ways in which they endeavor to raise awareness about devastating lung diseases. From the storytelling and artistry of patients, to a documentary film memorializing an actor, to a patient who ran in Bay to Breakers 2016 during the conference, the companies will show how these individuals are not defined by their lung disease diagnoses.

Will Lewis, MD, Insmed president and CEO, and his company celebrate the artistry of patients from around the world with A Thousand Words About NTM.

Will Lewis, MD, Insmed president and CEO, and his company celebrate the artistry of patients from around the world with A Thousand Words About NTM.

Insmed Inc. in Booth 1741 paired patients with artists from around the world to create a disease awareness initiative, A Thousand Words About NTM (nontuberculous mycobacteria), which they will showcase in its booth. Their stories and words have inspired artists to create one-of-a-kind original artwork. These works of art have helped patients communicate what they’ve often struggled to put into words—the long, difficult journey to an NTM diagnosis.

Insmed is developing novel, targeted therapies to help serve the critical unmet needs of these patients. This exciting and unique project strives to raise awareness about NTM among physicians and could bring about earlier diagnosis for patients.

ndd Medical Technologies in Booth 2001 is the official pulmonary function testing sponsor working with Julie Nimoy and David Knight to promote COPD: Highly Illogical, a documentary film tribute to Leonard Nimoy, who had chronic obstructive pulmonary disease and died in 2015. The film illustrates the struggles Mr. Nimoy endured before, during, and after his lung disease diagnosis.

As a sponsor, ndd strives to assist in carrying out Mr. Nimoy’s vision to spread the word on early diagnosis and management of COPD. Through this documentary, the company hopes to educate patients, caregivers, physicians, and all those touched by the disease.

For more information, visit or follow ndd on Twitter @nddMedical for updates.

Primary Ciliary Dyskinesia (PCD) Foundation in Booth 1030 will feature Mary Rose Kitlowski, who runs races around the country to raise awareness about PCD, lung diseases, rare diseases, and oxygen needs.

During Bay to Breakers 2016, she wore her portable oxygen concentrator. Ms. Kitlowski currently has a FEV1 of 40 percent and needs supplemental oxygen during strenuous activity. 

She has a goal of participating in races in all 50 states. She has raced in eight states and plans to add five in 2016. Although she raced in California in 2015, she entered the Bay to Breakers 2016 to continue her efforts to raise awareness about lung-related issues and, in conjunction, bring attention to the ATS International Conference.

She and her sister, Rebekah Giannakos, who has PCD and had a double lung transplant in June 2014, are invited patient speakers for the PCD scientific symposium from 9 to 11 a.m. on Tuesday in the Moscone Center, Room 3007/3009 (West Building, Level 3). 

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