NEW YORK - You may have heard of, but many people don't understand what it really is.
That's why those living with the disease are making it their mission this month to shine a spotlight on it.
As CBS2's Lonnie Quinn reports, Melissa Shiffman was diagnosed with cystic fibrosis, or CF, when she was 7. Her life would only get tougher as she got older.
"Even though I had a pretty easy childhood with my lung issues, it gets progressively worse. So my experience was mostly with my sinuses. I had 13 sinus surgeries growing up... my lung function started decreasing," Shiffman said.
CF is a genetic disorder that causes persistent lung infections and limits the ability to breathe over time.
"It's something that I have to deal with every day. I wake up and I can never just run outside and grab a coffee, I have to do my vest, which is airway clearance, and that takes an hour in the morning and an hour at night," Shiffman said.
She's now 48, an age some with CF never reach, including her own brother.
"My brother passed away from cystic fibrosis when I was 14. We need to raise awareness so we can fundraise, so that we can all live better, healthier lives," Shiffman said.
The month of May is dedicated to CF awareness.
, held this year on the 15th at the South Street Seaport. Quinn had the honor of .
"I have been personally involved with CF since 1997, working at Charlottesville, Virginia. And then I was with you down in Miami, Florida, and then here I am with you guys here in New York City," Quinn said.
Max Hesse is a junior at Stuyvesant High School.
"I was diagnosed with it when I was two weeks old, and since then I've been pretty much doing two sets of treatment a day: A 30 minute one every morning and a 40 minute one every night," Hesse said.
His mother Marla is a CF Foundation board member. The mother-son duo is determined to help educate the public, one step at a time.
"That's why it's so important to do walks like this, because it is a rare disease, and so it's harder to get funds for research," Marla Hesse said.
"Even though I live and breathe it every day, there are a lot of people who don't know what it is is. We're fundraising for obviously a cure, but also medical interventions, and to raise money outside of our little community," Shiffman said.
A little community of only around 30,000 people in the U.S.
They are small but mighty in their mission, even throughout the COVID-19 pandemic, which brought on extra challenges.
"I think for the first real months of COVID, I don't think I really left the house more than once a month, because I was scared of it for myself. My parents were scared of it for me, because COVID affects the respiratory and that's what CF affects," Max Hesse said.
But with vaccines distributed, the CF community was finally able to safely unite outdoors for the first walk since before the pandemic.
"It feels wonderful to the staff that have been working remotely staying in touch with our families. Our families are our lifeblood. That's who we work for. We raise money for research, for drug development, all for the purpose of extending life for the families," said Margie Ostrower, executive director of the Cystic Fibrosis Foundation.
"It feels really amazing," Shiffman said.
CF families hope awareness and fundraising does not end in May, but they believe this month is a step in the right direction.
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