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gary provencher

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1 reviews

Review for Cystic Fibrosis Foundation Headquarters, Bethesda, MD, USA

Rating: 5 stars  

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.

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

Role:  Client Served