Monday, February 13, 2012


This past weekend was such a wonderful weekend! As I have for the past 3 years the weekend before the Valentine's Day, I went to the Cure Finders' "A Special Evening... A Special Cause." It is a fancy dinner and dance complete with silent and live auctions in Pigeon Forge. I always enjoy dressing up to go to this fund raiser, but the best part of the weekend came earlier that day.

The guest speaker for the dinner was Richard Mattingly who is the Executive Vice President and Chief Operating Officer of the Cystic Fibrosis Foundation. Saturday afternoon, they had a meet and greet luncheon with him. Mr. Mattingly spoke about the new developments and research going on with cystic fibrosis. He spoke in detail about where the money that I spend my time and efforts raising have been going. They are dishing out millions of dollars to get major drug companies to actually invest in such a small disease. It is a big risk for companies to take on a disease that affects a total of 70,000 people worldwide, but money talks. And that is exactly what has been working.

This is a clip from an article that appeared in the Wall Street Journal:

"To further entice these small firms, the CF Foundation offered millions of dollars to do the drug discovery work. “We took the risk” so the companies would start and projects would develop the momentum, Beall says. The foundation has now given or committed to give $315 million to companies for drug research."

Here is another one from The Boston Globe:

"The Cambridge biotechnology firm FoldRx Pharmaceuticals Inc. will receive $22 million from the Cystic Fibrosis Foundation to develop and commercialize drugs aimed at treating the fatal genetic disease, a disorder of the lungs and digestive system that afflicts 70,000 people worldwide."

Over the years, the Cystic Fibrosis Foundation has gone out of its way to makes sure that these drug companies have no reason to say no. After the success of Kalydeco, Vertex has begun working on a combination of that drug and another called VX-809. This is a combo built for those with the delta F508 mutation (ME!!!). The CF Foundation has dished out more money to get the process to go quicker. Here is the kicker... Right now, if everything goes well with the trials for Kalydeco and VX-809, they are predicting it to get through the FDA by 2016!!!! There is a lot that has to go right for that to happen, but that is huge! Even if it doesn't work that way, they are on their way to finding something that does work! I have never been so hopeful for my future!

With all of that being said, the money that my friends and family have been so generously giving over the years, has been going exactly where it should. Money is the only way we get closer to a cure, and if you would like to contribute to that, click on the link below or the one to the left.

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