Just breathe – Cystic fibrosis concert raises more than awareness
By Bob Doda
Music lovers haven’t reached the point yet where they can go to their favorite venues to see a show due to the COVID-19 pandemic – a fact all too real for a Nassau woman used to throwing a bash each year to raise money toward a cure for cystic fibrosis.
So this year she brought the music right into people’s homes, and raised more money than she ever had before.
WATCH THE CONCERT: Virtual Fundraiser
Kristy O’Connell began working at News 12 Digital as an intern on Oct. 7, 2016. Eventually, she would become a valuable member of the freelance digital team.
Over the course of her internship, I learned that Kristy had cystic fibrosis, a disease that I knew almost nothing about at the time. The only thing I did know was that Gunnar Esiason, son of quarterback and radio host Boomer Esiason, was also inflicted with the disease and has been an advocate for years.
The more I learned, the sadder I got, because most people with CF are born with the clock ticking faster than those with normal functioning lungs and digestive systems.
Some facts about the disease from the Cystic Fibrosis Foundation:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Kristy is also very lucky. She falls into a category of those with CF who are ultra-responsive to drug treatments, which has kept her from experiencing the worst symptoms of the disease and extended her life. She has written extensively about her life with CF on her blog.
With all that said, she’s just good people, and I’m glad to know her. The performers at her “I chug for someone with CF” awareness event would agree. They helped raise more than $3,000 that will go toward the CF Foundation, which works to find a cure.
Those who performed include Frank Matos, of Deer Park; Devin Wohnsigl, of Hicksville; James Liverani of Wantagh; Tom Mandoukos, of Franklin Square; Julian Halikias, of Franklin Square; Anthony Gioia, of Malverne and American Idol top 40 finalists Shannon Gibbons, of Bellport and Amber Fiedler, of Idaho.