After Losing Six Family Members To Disease, She Walks For A Cure

Sisi Suarez, of Jackson Heights, lost her mother, Ines Conde, and all five of her mother’s siblings to pulmonary fibrosis (PF), a disease that causes progressive scarring in the lungs. There is no cure for the disease, which affects more than 200,000 Americans annually. Fifty-thousand new cases are diagnosed every year.

Suarez, her siblings, and cousins are among the many thousands that have experienced the heart-wrenching loss of loved ones to pulmonary fibrosis. But she has turned to a community walk for PF to help her work through the pain while trying to celebrate her mother’s life.

“I’m walking for my mom,” said Suarez. “Pulmonary fibrosis is lethal but people don’t know about it and that’s scary. My mother would be proud of us for raising awareness to try to help find a cure.”

Ines Conde and her siblings were born and raised in Ecuador. Four of them, including Ines moved to the U.S. as adults. Ines’ brother, William, in Ecuador, was the first to pass away from pulmonary fibrosis. Then her sisters, Elsa and Cruz Maria, were diagnosed. They died within three months of one another. Suarez said her mother died in 2015 after struggling with the disease for two years. Suarez lost her remaining uncles, Santiago and Franklin, to PF last winter.

“A whole generation of my family was wiped out by pulmonary fibrosis. I’m worried about my children and other relatives,” said Suarez. “We don’t know why this happened.” With so many family members impacted by the disease, Suarez wonders if there is a genetic cause or if the disease was triggered by exposure to birds, which is a risk factor for pulmonary fibrosis. Her grandparents had a pigeon coop in their family home in Ecuador.

On Saturday, April 27, Suarez and 31 family members will join the Pulmonary Fibrosis Foundation Walk in Riverside Park, 103rd and Riverside Drive. Participants can choose from a one or three-mile course along the Hudson River. The Walk supports programs for individuals living with pulmonary fibrosis and helps funds research projects for a cure. More than 500 people are expected to attend.

Suarez shared her story and pictures of her relatives on her PFF Walk fundraising page. The family has raised $3,627.28, far surpassing their fundraising goal of $2,000.

Registration for the PFF Walk, which is free, is available in advance at pffwalk.org and on the day of the Walk beginning at 9 a.m. The Walk starts at 10 a.m. and will conclude with a finish-line celebration.

For those unable to join the PFF Walk New York City, a virtual opportunity is available. People may register for the online walk and interact with the PF community across the globe. The PFF encourages virtual participants to complete their miles at a park or route close to home.

For more information and to register for the PFF Walk, visit pffwalk.org.