I have quit supporting the CFF altogether because of rudeness in general toward the actual CF patients. And the realization that they really do not care about the patients. they care about the money they raise. They are a fund raising arm of the drug companies, and I have learned that reality every time I have tried to get involved.
About 15 years ago, I decided to do a 10K walk in Nashville. I was the only CF patient on the walk and I wanted all to know that I was living with CF. I met some wonderful people who also were walking. In fact, I am still friends today with one of them. But the CFF officials running the Great Strides walk gave me a very cold response when I and my wife showed up. They really did not care that I was there. The media was there, and they too did not care much.
Many people either finished the walk way earlier than I did, and most did not even finish the entire 10K. I know this because I kept up a good pace, and very few people passed me. But I walked the entire 10K, and sprinted the last 100 yards. When I crossed the finish line, most of the CFF people had already left, and they actually tried to take down the Finish Line banner and leave before I finished the last lap, but wife told them, "over my dead body". This was a big deal to my wife that I could do this walk, and she was not letting them take this away from me.
Again, last year, I tried to get involved in S. FL. (where we live now). I shared the success of my adult stem cell treatments and how it brought me back from the dead, and has been reversing CF in my lungs. The director of the Palm Beach and Ft. Lauderdale chapters were excited to hear about the success and meeting me. I even met the woman who created the 65 Roses campaign (her son was not able to say Cystic Fibrosis, and it sounded more like "sixty-five roses"). I thought they would want to support anything to bring healing for CF patients. SO NOT TRUE. One of them went up the ladder of HQ, and was completely shut down in supporting anything but research for drugs. So their motto about finding a cure should really be "find another drug".
Then they tried to recruit me to get involved with the CFF. I agreed with one of the chapters, and I and my wife were named a "Couple of the Year". After seeing the promotion efforts, I felt like I was being used just to get more money from people, so I backed out. The CFF will use a small number of CF patients to get their message across, but other than that, they don't seem to care. I have asked for assistance from the foundation several times over the past 30 years, and not once has the foundation every helped with anything. They actually said their mission is not to help patients, it is only to raise money for research.
So now you know that my mission is not to help the CFF. Thanks for letting me rant and rave on this forum, but I am burned up by the lack of caring on such a grand scale. I have researched treatments other than the mainstream, especially when my own CF doctors have given up on me several times, and said they have no other treatments. They actually told my wife to get over it and learn to deal with it because I was at end stages and would not live more than a few months. That was 3 years ago. They said the "Stem cells absolutely do not work." When I asked "How do you know that, have you seen any clinical trial results?" The one doc (name withheld to protect the guilty) at Vanderbilt, said "No." Then I said, "If you have not seen clinical trials, the best you can possible say as a scientific person is, "We do not know." But you are saying they "absolutely do not work." She got pissed off at me, turned around in her rolling seat, and refused to talk to me.
We have to leave Nashville for my health. And 3 years later after pursuing adult stem cell treatments, I am healthier and breathing easier. The normal tuneup option was no longer working. Good thing the stem cells "ABSOLUTELY" worked, because I have not even needed a tune up in 3 years. Praise the Lord for creating those wonderful little cells in our bodies that we call stem cells.
