Community spotlight: The Cystic Fibrosis Foundation.

The Cystic Fibrosis Foundation (CFF) was established in 1955 by a group of concerned and determined parents of children with cystic fibrosis (CF). At the time, very little was known about CF, and the life expectancy for those affected was very short – most children would not live to attend elementary school. In the years since its founding, the CFF has contributed donor-raised funds to searching for a cure and helping improve the lives of those diagnosed with this devastating disease.

In November, the Western New York chapter of the CFF is celebrating 11 years of Rising Stars. This annual program (which has gone virtual for 2020) honors young professionals, ages 21 to 40, in WNY who are committed to raising funds and awareness for the foundation.

This year, Crowley Webb analyst Chris Carbone has been chosen as a Rising Star, a well-deserved achievement for his years of work with the organization. In celebration of this honor, we sat down with Chris to learn more about the foundation.


How did the Cystic Fibrosis Foundation and its Rising Stars program begin?

Through their innovative model, known as venture philanthropy, the CFF has raised funds that have been used for CF research, care, and treatment. Because of the funds raised by the foundation, decades have been added to the lives of those diagnosed with cystic fibrosis. Today, people fighting CF are living into their 40s and beyond – all because of the medical advancements made possible by donations to the foundation.

The WNY chapter of the Cystic Fibrosis Foundation will celebrate 11 years of Rising Stars this year. Each year, the CFF honors young professionals in WNY who are committed to professional growth through a guided fundraising and awareness campaign. The Rising Stars name comes from a partnership with Macy’s that was formed in 2012 from a relationship between a volunteer and a Macy’s employee.

In the past 11 years, honorees of the program have used their leadership skills to generate more than $500,000 to further the mission of the CFF. Their fundraising efforts are helping look for a cure for cystic fibrosis and providing all people with the disease the opportunity to lead full, productive lives.


Can you tell us more about the work that the foundation does?

The CFF is the world’s leader in the search for a cure for cystic fibrosis, and nearly every CF-specific drug available today was made possible with the foundation’s financial support. The mission of the CFF is to cure cystic fibrosis and provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

The CFF supports a wide range of innovative research programs to discover and develop new and effective CF therapies. This has led to tremendous progress in understanding and treating the disease. In addition to research, the foundation provides expert care for people with CF through its nationwide network of care centers. Cystic fibrosis is a complex disease, and as such, it affects every person differently. Because of this, the CFF is dedicated to helping people with CF get individualized care tailored to their unique needs.


Why did you decide to get involved with the foundation?

During grad school, I volunteered to help with a CFF gala and heard some amazing stories from CF fighters and parents about all the foundation does for them. At that event, I found out a co-worker of mine had a daughter with cystic fibrosis. That was my first experience really learning about CF and how it impacts people lives – it was very inspiring.

An alumnus of the Rising Stars program reached out to me earlier this year to explain what the program is about and asked if I was interested in being nominated. I saw this as an opportunity to give back to the community and get involved with a great organization and cause in a way that went beyond offering a yearly donation or attending a gala. My girlfriend’s cousin has CF, and I wanted to also show my support to her and her family by getting more involved with the foundation.


Why should people support the Cystic Fibrosis Foundation?

 The CFF funds research that goes into CF treatment, but the foundation is more concerned with finding a cure. The fact that drug development funded by the CFF has led to longer and healthier lives for those with CF is amazing, but what makes the foundation so special is that those achievements aren’t good enough – they won’t stop their mission until a cure for cystic fibrosis is found.


What are current initiatives or other ways we can support the foundation today?

Between now and November 9, 2020, you can visit my fundraising page on the Rising Stars website and donate to help me reach my goal of $2,500 in donations (we’re getting so close!). If you like video games, another honoree and I have teamed up with Great Lakes Gaming based in Rochester to host two online video game tournaments, one for Valorant and another for Call of Duty. It costs between $25 and $40 per team to register, and 100% of the proceeds will be donated to the CFF. Teams have a chance of winning between $25 and $300 from a prize pool that has been generously donated by Great Lakes Gaming. If you’re interested in signing up, please visit Battlefy.


I also encourage people to visit the Cystic Fibrosis Foundation website and look at the great ways to get involved beyond donating. Our thanks to Chris for sharing his story, and congratulations on being honored as a Rising Star!