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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Lung Diseases, Specifically Named Diseases, Specifically Named Diseases Research

Mission: The CF Foundation is dedicated to improving the quality of life for people with CF by funding the research necessary to develop new treatments and one day, a cure. CF is a complex, genetic disease that affects about 30,000 children and adults in the United States. Today, the median age of survival for an individual with CF extends into the early 30s. CF is caused by a defective gene that causes the body to produce an abnormally thick, sticky mucus, which clogs the airways, leading to chronic lung infections.

Programs: The CF Foundation currently funds more than two dozen clinical trials for CF to address the lung complications and dysfunction in people with CF and to correct the basic defect in the cells. The CF Foundation also supports educational programs and tools for care-givers of people with CF and accredits more than 115 specialized CF care centers around the country.

Community Stories

11 Stories from Volunteers, Donors & Supporters

Rebecca47

Volunteer

Rating: 5

As the mother of a daughter with Cystic Fibrosis, I have found the Cystic Fibrosis Foundation to be the most authoritative and accurate source of current information regarding CF. This information is indispensable to everyone with any connection to Cystic Fibrosis, especially to parents of newly diagnosed children. The CFF is also incredibly efficient, spending less than ten percent of money raised on administrative costs, and more than 90 percent on cutting-edge research in search of lifesaving treatments and a cure for this devastating disease. In fact, funding and research from the CFF has resulted in almost every available CF therapy and drug. Its most recent success is Kalydeco, the first drug to address the underlying cause of Cystic Fibrosis. While not a cure, It has the potential to GREATLY improve the quality of my child's health, as well as the health of others with CF. My family, friends, and I proudly support and promote the Cystic Fibrosis Foundation.

Michael87

Volunteer

Rating: 5

My friends son has CF, and he asked me to help at the local Great Strides walk -I've now been supporting the CF Foundation for 9 years. I've also attended many different CF sponsored medical updates. I'm continually impressed with the work the Foundation does. It is my understanding that nearly 0.97 cents of every dollar donated go to CF research. I will rate the CF foundation as 5 of 5 stars! I'm not sure yet how the CF Foundation and the CF Services (a subsidiary) are being rated - together or as separate companies.

Review from CharityNavigator

Donor

Rating: 5

My granddaughter has CF and the CFFoundation has had a very positive impact on her life. In all probability she would not be here if not for the research done with funds raised by the foundation. How anyone can blame the CF Foundation for their insurance company refusing payment and using the flimsy excuse the pharmacy is overcharging is beyond me. That is the oldest trick in the book for insurance companies to not pay. Did you try to work with the pharmacy and/or the insurance company to reach a better solution for you?

Review from Guidestar

3

Client Served

Rating: 5

You people either with CF or have familly memebers with CF that rate the CFF with one star are disgusting. This foundation was instrumental in fianacing numerous drugs and therapies that have increased the life expectancy from less than 5 years old to nearly 40. They recently worked with Vertex to develop Kalydeco which is nearly a cure for those with the 551 mutation, and I believe is the first drug to actually correct a genetic defect. In addition they are currently in phase 2 studies of combining kalydeco with other drugs (VX 809 or 660) which would essentially be curing CF (yes patients would have to take a couple pills for the rest of their lives). I understand that you may have had a specific problem dealing with the foundation but rating it one star on a non-profit charity review website is beyond idiotic. Where would we be without the CFF? Life expectancy would still be under 10. Don't you realize potential donors go to these sites to see how reputable the foundation is? Do you want people to not donate to the foundation because you gave them low ratings? Please consider removing your posts.

Review from CharityNavigator

Client Served

Rating: 1

I just received an explanation of benefits from my insurance company for charges I received from the CFF CF Services Pharmacy. They were above reasonable and customary charges. I thought their pharmacy was there to help the patients with the high costs of pharmaceutical drugs, not leave them hanging for more out of pocket expenses to pad their pockets. This not-for-profit profit pharmacy needs some patient advocate oversight.

Review from CharityNavigator

Client Served

Rating: 1

Actually, client NOT SERVED. They told me2 days ago they would accept Medicare for the Acapella Choice and said they would "educate" their staff member, too. Yesterday, Joy Gross from the cffpharmacy services center called me to tell me they WOULD NOT fill the Rx for the Acapella Choice through Medicare. I will forward this complaint to Medicare, (I did this morning) , the entire CF community needs to be aware this organization did not offer any additional help/resources for acquistion of this device. You are on your own and I would avoid this hugely, well-endowed, self -serving organization. I will also notify the CF Congressional Caucus members. Yes! Our Congressmen need to know this organization is doing a lousy job and are choosy.They don't adhere to meet the needs of the all CF patients.

Client Served

Rating: 5

My son has cystic fibrosis and while he is only 10 years old, he has already benefitted greatly from the CFF and the medications that they have helped push quickly through to the public. They have used their money in innovative ways to partner with small biotech companies, in particular Vertex which has both a srug in stage 3 and another one in state 1 which has the potential to allow patients to basically live a fairly normal life with simply taking one pill. We also use their pharmacy and find that the service is impeccable and when you are managing so many medicines, it is wonderful to have all of your medications in one place which delivers to my front door. Their prices are generally better than what I can get at my local pharmacy as well as the pharmacist is well versed in those particular medications. There is no question in my mind that the CFF has already made a huge difference in our son's life and that a cure will come as a result of the CFF.

Review from CharityNavigator

General Member of the Public

Rating: 1

With the healthcare system the way it is, The Cystic Fibrosis Foundatin needs to change to change their mission statment and provide more direct support to patients.
Their oriianl not for profit pharmacy should be a not for profit pharmacy. They are putting ptients in debt while their pstients are raising millions of dollars to the cause.

It's time for a change

Review from CharityNavigator

Board Member

Rating: 5

As Chair of the Board of the Cystic Fibrosis Foundation and the mother of a son with cystic fibrosis, I want to point out that the compensation listed on this site for our CEO Robert J. Beall, Ph.D. is misleading. As reported to the IRS on Form 990 for 2009, Dr. Beall's base salary was $470,458. Charity Navigator arrived at the "$2,011,217" figure by adding the base salary and 12 years' worth of deferred compensation (among other items), the majority of which was already reported on previous years' IRS Forms 990.

I am posting this comment to make clear that the CEO's base salary for 2009 was $470,458, and not the much higher number published by Charity Navigator.

On a personal note, I know of no other charity more deserving of support than the Cystic Fibrosis Foundation. I credit the Foundation and Dr. Beall in particular for the medical advances that have allowed my son - and countless others - to thrive and reach adulthood.

Catherine C. McLoud

Donor

Rating: 2

I have to question the compensation for Mr. Beall, President and CEO. Is $2,011,217 correct? Is Mr. Beall being compensated 1.38% of of this foundation's expenses while it's operating $47,541,395 in the red?
Please verify and update as soon as possible. I find it difficult to justify donating to a charitable organization compensating its President and Ceo so well.

Gregory in Crestview, Florida