Running To Be ‘Seen’ and Inspire Those on Oxygen

Mary Kitlowski founded Running on Air to combat a feeling she got that "people on oxygen shouldn't be heard or seen." The group encourages those who need supplemental oxygen to live life to the fullest, whether that's participating in races or being active in their communities.

Mary has primary ciliary dyskinesia, a rare genetic disease in which the cilia lining airways malfunction, leading to chronic infections and a wide range of disease severity. Both Mary and her sister, Rebekah, developed bronchiectasis in their teens, and Rebekah has since received a lung transplant.

Mary, herself, wants to run in every state. In November, she will cross New York off the list by participating in the NYC Marathon. She had hoped to alternate running and walking, but a recent lung exacerbation will likely force her to walk the 26 miles.

Still, with a portable oxygen concentrator strapped to her back, Mary will be carrying a powerful message.

"Yes, if you need supplemental oxygen, life is harder," she says. "But if you really want to do something, you should find a way to do it, even if you need to modify things a bit."

When her exacerbation is under control, Mary hopes to qualify for the first clinical trial of a compound (VX-37) specifically targeting PCD.  Although Running on Air doesn't fund research, it does support the Pulmonary Ciliary Dyskinesia Foundation, an ATS PAR member focused on finding a cure. "Research is our best hope," Mary believes, and that is an important message she also wants everyone to hear.

Thank you, Mary, for sharing your story!