Seeing is Believing

Posted on March 28, 2013 by jbburnett

Many of us have always wondered where our donations actually go when we give. There are many times results that we see that show that the "majority" of our dollars go to a specific area. We are all about the numbers as they apply to results. We want to know if our money is being directed to the right areas and if we are fighting a good cause or just keeping hope alive.

There is no need to wonder about giving to CFF. They are fighting for us every hour, every day, every year until we cure CF. They often say that "We will not stop until we find a cure". The we includes you and I and every single dollar that is donated to the foundation. There are some remarkable milestones that we are reaching and its because of every walk, ride or just simple dollar we raise to find a cure. It doesn’t matter how the dollars get there, it’s the plain and simple fact that they do get there and then are put to work to make a difference.

Our family has put effort into gathering every penny possible to help raise funding. I often get asked what the best idea to raise money and awareness is and I will say that the best idea is yet to come. My dad is putting together a table for awareness and donations at his neighborhood festivals. Brittany’s family recently asked that donations be given in honor of her late grandfather. My niece has organized a bake sale that she has created around the idea of raising money for CFF. It was her own idea and she has done all the work. I should probably give some credit to my sister and brother in law, but it was my niece’s idea. They set up at a big auto-cross event and keep improving the idea to make even more the next time. She is dedicated to something that she believes in and has an emotional attachment to. She is only a young teenager and could be into much more exciting things, but she sets it all aside once a month to create more tomorrows for Sutton and all the other CF patients fighting to win. It doesn’t matter how, it just matters that it happens.

Drugs and treatments are constantly in the works to help better the lives of those with CF. Kalydeco™ is a new oral medication for the treatment of cystic fibrosis, approved by the U.S. Food and Drug Administration (FDA) in January 2012. Kalydeco™ is such an amazing breakthrough for CF. It allows the production of the protein, CFTR, which is the root defect that gives a person CF. One could basically say, that it pretty much, cures the disease.

Kalydeco was named by Forbes as "The Most Important New Drug of 2012"

The most important thing to note here is that it wasn’t necessarily because some drug company believed in it, although it couldn’t happen without them, it was because CFF put forth the funding and determination to make it happen. Forbes goes on to say "Kalydeco™, for cystic fibrosis, is a triumph of genetics and drug development, the first medicine to directly affect the genetic defect that causes the disease." It only affects 4% of the CF population, but it is a start, and it’s not the first breakthrough treatment that CFF has financially backed. They are dedicated to putting your dollars where they count and curing CF. I want to add that while CFF has the rights to the drug, they do not use it for monetary benefit. for example, the rights to another drug funded by CFF were sold in order to make Kalydeco™possible. In reality, your dollars are essentially being recycled to go even further. There are many other drugs and treatments in the works that are being targeted in the same way as Kalydeco™. We have a cure in sight and can’t slow down now, not until we have 100% of CF patients accounted for.

Thanks to all of you who support, not only Sutton, but the foundation and all of those fighting with CF. We will not stop until everybody has a cure and we are on the right path!

Below is a current CF Drug Pipeline showing the current state of drug and treatment development: