Atlantic Cares Supports The Cystic Fibrosis Foundation

Spencer Reid has worked at a variety of nonprofits, but likes the model he works in now best. While the Cystic Fibrosis Foundation is a national organization, it’s split up into regional chapters that allow employees to get much more personable and granular with their work. 

“With the regional model, you get the best of both worlds,” said Reid, who serves as the development director for the Northeast Florida chapter of the organization. “We can leverage that national structure and also … support the people in this community that have CF.” 

Cystic Fibrosis is a progressive, genetic disease that affects the cells that produce mucus, sweat and digestive juices. It damages the lungs, pancreas and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the U.S.

When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no treatments. In the following years. Research has led to groundbreaking discoveries, including identifying the gene and protein responsible for cystic fibrosis and paving the way for new treatments. The foundation seeks to improve quality of life for those living with cystic fibrosis and to spearhead medical research in the search for a cure.

Now, there are 70 chapters of the foundation across the country, which host events and serve as a hub for their local communities. The Northeast Florida chapter hosts a cycling event in DeLand, walks in Jacksonville and Gainesville, a Disney marathon and a gala hosted at the Jacksonville Zoo. 

This work is why the Cystic Fibrosis Foundation was chosen as an Atlantic Cares recipient.

“These events are really intended to bring everyone together,” Reid said. “Community is important in what I call an ‘orphan disease’ -- it’s not under the larger banner of cancer or something. People can feel so alone with this, even though one in every 30 people is a carrier. It can affect a lot of people without them even knowing it.” 

The walks serve as fundraising events as well as community gatherings. One particularly inspiring cycle participant, Max Paul, has consistently led a team to become the highest fundraiser for the entire event, Reid said. 

“It’s really him driving that,” Reid said. “Last time they raised $23,000 and I think $16,000 or $17,000 of that was Max alone. He also raced our 100-mile course, which for anyone who has CF, is impressive. I can’t understate how much CF has a huge impact on your capacity for athletic feats, and  he’s doing stuff people couldn’t do without CF.” 

Another task of the foundation is the Compass program, which offers assistance in quality of life for those living with cystic fibrosis. Any individual can call in and connect to representatives to help them with things like navigating insurance, figuring out healthcare or school-related issues. The foundation also partners with local hospitals that are able to treat CF-related issues. 

“This is a disease that affects every organ in your body and comes with all kinds of side effects and impact on day-to-day life,” Reid said. “Every year that goes by, we can lengthen lives, improve quality of life and understand this disease better. I firmly believe we’re within sight of a cure. Gene replacement is extremely promising in terms of completely eliminating cystic fibrosis from the gene pool, which is pretty cool.”

Looking forward, the North Central Florida foundation chapter aims to boost event attendance and deepen relationships with care centers so that the cystic fibrosis community remains top-of-mind. 

And while online donations are welcomed, Reid encourages people to consider participation in a walk, attending the gala or legacy gifts, which are some of the highest impact gifts that the foundation gets. 

“Everybody wants to make a difference,” Reid said. “Whether your gift is $5 or a million, it will make a difference here.” 

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To get involved in the North Central Florida chapter’s events or to donate, click here.

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