List all agencies

Health Condition Search

Use this pull down menu to see a list of member agencies related to a specific health condition.

Cystic Fibrosis Foundation

150 North Michigan Avenue, Suite 400
Chicago, IL 60601
312-236-4491
800-824-5064 Toll-Free
(312)236-2797 Fax
www.cff.org

Mission
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

Facts and Statistics
Cystic fibrosis is a genetic disease affecting over 30,000 children and adults

More than 10 million Americans are unknowing, symptomless carriers of the CF gene

According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is 33.4 years.

Many children with cystic fibrosis call their disease 65 Roses®? because it is easier to pronounce. The story of the origin of 65 Roses®? can be found here.

Health Tips
The sweat test is the standard diagnostic test for CF. A sweat test should be performed at a CF Foundation-accredited care center where strict guidelines are followed to ensure accurate results. This simple and painless procedure measures the amount of salt in the sweat. A high salt level indicates CF.

Fundraising & Administrative Percentage
9%

Testimonials
Sean Doyle and his wife, Margie, have four children and none of them has cystic fibrosis (CF). It might seem strange then that Doyle has willingly embraced the often time-consuming task of chairperson of the Greater Illinois Volunteer Leadership Initiative (VLI). The fact is that Doyle’s nephew, Kevin, 12, has CF and Doyle knows that if one of his own children had been born with CF, his siblings would have been there to help him. So, when he is not busy in his job as a trader at the Chicago Mercantile Exchange, or spending time with his children, Doyle is zealously raising funds and recruiting volunteers for the CF Foundation.

Doyle’s motivation comes from the reality faced by the entire CF community. The opportunities in CF science are outpacing the rate of fund-raising. In other words, there are more drug development opportunities out there today than the CF Foundation has money to fund. To knowingly leave them unfounded and undeveloped is not an option. Therefore, Doyle and his VLI committee members have embraced the challenge of bringing fund-raising for CF to the next level.

And, they have had significant success. In fact, in 2003, Doyle and his VLI committee were responsible for recruiting 71 new volunteers and raising more than $460,000! In a letter Doyle sent to friends, acquaintances, business partners and even strangers, he explained the reasons why new volunteers are so desperately needed.

“In order to raise the additional money that is needed to pay for this very important research, the CF Foundation needs help. We need volunteers. The CF Foundation is a volunteer-driven organization. We do have a small staff in Chicago, but they cannot get the job done without help. We need people, like you, who care – and who will give of their time. A little – or a lot – it doesn’t matter. We need you.”

Doyle and his VLI committee also took the initiative in Illinois by creating two new golf events, the 65 Roses Golf Event and the Legends Golf Classic. The Legends Golf Classic was targeted to raise $20,000, but actually raised $76,000, money that might not otherwise have come to the CF Foundation, if it hadn’t been for the VLI.

Additionally in 2003, Doyle and his wife co-chaired the Starlight Gala, which raised nearly $260,000, an increase of 33 percent over the previous year’s event! Through the powers of networking and his desire to bring on new volunteers at any level and in any capacity, Doyle has truly had an impact on the success of the VLI in Illinois.