Cystic Fibrosis Foundation Headquarters
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October 28, 2012
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.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
June 11, 2012
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.
More feedback...
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
March 19, 2012
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?
The Great!
I've personally experienced the results of this organization in...
granddaughter's health
More feedback...
Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2012
What specific problem, purpose, priority, or project prompted your gift?
granddaughter's diagnosis
Why did you make your donation at this time?
I make donations every year
What would you tell others about this organization?
Give, Give, Give. This is one of the best run charities and they are making a huge difference in many lives.
March 8, 2012
1 person found this review helpful
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.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
December 16, 2011
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.
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How would you describe the help you got from this organization?
None
How likely are you to recommend this organization to a friend?
No
How do you feel you were treated by this organization?
Badly
When was your last experience with this nonprofit?
2011
May 12, 2011
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.
The Great!
I've personally experienced the results of this organization in...
Never had a good experience with them. Highly self over rated and you should see the $$$ intake from all the Great Strides walks that is doled out to each state chapter and their CEO. Hardly any $ goes to patient care.
Ways to make it better...
If I had to make changes to this organization, I would...
eliminate it and force the staff to be volunteers and the CEO would have to work for his money and not live off the backs of hard working families who falsely believe this organization is beneficial for the community and cystic fibrosis families and patients.
More feedback...
How would you describe the help you got from this organization?
None
How likely are you to recommend this organization to a friend?
No
How do you feel you were treated by this organization?
Badly
How did you find this group?
I have CF and gave the CFRI in California an excellent review recently. They actually do help patients and follow up and you get personal contact and correct information.
What, if any, change in your life has this group encouraged?
To get rid of phony, non profits, expose them for what they are. Moochers, blood suckers , parasites.
When was your last experience with this nonprofit?
2011
April 20, 2011
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.
The Great!
I've personally experienced the results of this organization in...
my son's improved lung function and growth as a result of CFF therapies
Ways to make it better...
If I had to make changes to this organization, I would...
Lower Beal's salary - though I have to say that his irreplacable to this organization and to this disesase.
March 25, 2011
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
The Great!
I've personally experienced the results of this organization in...
[
Ways to make it better...
If I had to make changes to this organization, I would...
Yime yo change your goals and mision
March 2, 2011
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
The Great!
I've personally experienced the results of this organization in...
as Chair of the Board and mother of a son with cystic fibrosis.
Ways to make it better...
If I had to make changes to this organization, I would...
No changes recommended.
March 1, 2011
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
The Great!
I've personally experienced the results of this organization in...
NO
Ways to make it better...
If I had to make changes to this organization, I would...
N/A
More feedback...
Was your donation impactful?
Unsure
How likely is it that you would recommend that a friend donate to this group?
Unsure
How likely are you to donate to this group again?
Unsure
What specific problem, purpose, priority, or project prompted your gift?
Good cause.
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