Wow! What an exciting title I just wrote! I'm sure you are on the edge of your seat to see what I have to say now!
First off, I want to say that I really did intend to write something on this blog every day or, at the very least, every couple of days. Unfortunately, my father has been in the hospital (and in an out of ICU) for the past six weeks now and things are not really calming down with his health. I am trying to keep up a Caring Bridge page for him right now and that is taking up more of my time. I am going to do my best, however, to update over here too!
The Cystic Fibrosis Foundation has something called the Drug Development Pipeline, which you can view
HERE. I'm sure it will sound completely odd to you for me to call a bar graph beautiful but that's exactly what it is to me. This graph represents a hope for the future that drives me to get out and raise funds and awareness of the disease and the foundation.
The foundation calls it a "snapshot" of all the drugs and therapies, some in developement and some currently available to patients. They update it constantly. You can see that the most recent update just happened on February 22nd.
Each bar on this graph represents a drug that could save my daughter's life. Each time I see one of those bars move to the right, even just a little, it is a victory. Those bars are the reason we participate in a walk, a gala, a golf tournament and many other fundraisers each year. They are the reason I have twice gone to Washington D.C. for CFF conferences to learn what more I can do to further their progress along. A full ninety cents of every dollar raised by the foundation goes straight to what you see on that graph. I realize it may seem confusing if you are seeing it for the first time but there isn't a CF parent I know who couldn't immediately take you through it, drug by drug, and explain it to you. These medicines and therapies are a huge part of our lives or, in the case of the drugs already to patients, they are a huge part of our every day.
I want to highlight a few things for you. I hope you can feel my excitement as you read my words. If you look at the yellow section toward the top of the graph you will see what I consider to be the most amazing part of our current science. These drugs are the first of their kind to actually address the underlying defect of CF rather than just treating the symptoms. Every therapy Hayden does each day (Hypertonic Saline, Pulmozyme, TOBI, etc) are just trying to thin the mucus she already has so she can cough it up or, in the case of TOBI, they are trying to kill the bacteria that has harbored itself in that thick, sticky mucus. The drugs you see in yellow will actually correct the defect within the cells that the mutation causes - MEANING THE BODY WILL NO LONGER CREATE THE THICK, STICKY MUCUS. This is huuuuuuuggggee! Especially when you consider that these are oral medications! Hayden would take a pill three times a day and that's it! No more three hours a day of treatments and, basically, NO MORE CF.
If you'll look, you'll see that two of those drugs are already halfway through phase 3 drug trials. By the time Hayden is five years old she will probably be taking these medications. This is what the money we raise is accomplishing!!!!!! CF is an orphan disease and the foundation receives no government funding. Every dime spent on these drugs came from the foundation. I am so proud to be associated with a foundation that has as much drive and conviction as the Cystic Fibrosis Foundtion. We have a CEO who refuses to retire because he knows how close we are!
There are many things still to be done. Ultimately, we are still looking for THE CURE. Gene therapy has not come as far along as we would like but they keep trying! Bob Beall, our CEO, is also putting emphasis now on patient access to these drugs when they do come out. They are extremely expensive and he wants to make sure every patient has them, even if they have insurance companies unwilling to pay.
Every time you volunteer for a CF event or donate your money, you are making those bars move. I so badly want to attach the drug developement pipeline to my bio sheet for my pageant interview! Rest assured I will find a way to talk about it. I just wonder if 4 minutes is enough....:)
