Wednesday, February 1, 2012

To Those Who Have Donated to the CFF

This post is dedicated to all of you have ever donated to the Cystic Fibrosis Foundation (CFF) and to my dear friends who have the G551D mutation of CF.

For those of you who have selflessly given up your money or time to help find a cure for Cystic Fibrosis, you have helped create miracles. Remember a few months back, I mentioned a drug, named Kalydeco, which should greatly improve the life of people with the G551D mutation? Well, as of yesterday it has become FDA approved and will start to be used by patients with that particular mutation.

The price tag of the drug is at an annual cost of $300,000 a year which means that insurance problems will be the next struggle for those who are able to take the drug.  The reason for this high price tag is that Kalydeco is the FIRST drug to treat the UNDERLYING cause of CF.  It works to correct the problem in the gene.

Although I can not use this medication, because my mutation is DDF508 (the most common mutation which I share with 90% of the CF community), it is the biggest step toward a cure we have ever seen.  The CF community is all abuzz, and rightfully so.  We are all anxious to hear that this disease has been cured!  Your donations have helped to create this groundbreaking, miracle drug.  Thank you for all your contributions.

To my fellow CFers who have the G551D mutation, I honestly could not be happier for you.  I hope that your weight improves, your lung function improves, and that this drug adds YEARS to your life.  You all deserve it so much, and this is a reminder of why we all have to keep fighting each and every day.

Now, let's get moving on a DDF508 pill, shall we?


  1. This is awesome. It's a step in the right direction. Here's hoping they'll come up with something similar for your specific mutation. :)

  2. I fully believe that somebody will have a DDF508 pill available within 3 years or less. I'd be shocked if they didn't. There are SEVERAL companies racing to find that solution right now. :)

    BTW, I didn't realize until I saw your pic of Kalydeco... I was totally in a market research study on the packaging! LOL! I totally voted for that logo design, too, I think!

    1. I hope you are right Cindy! I am trying not to get too hopeful for DDF508 (which I have) because I am afraid to be disappointed, but I so hope you are right!

  3. I could be wrong, but I've always had the impression that the biggest hurdle was developing this kind of medication at all... and now that that gate has been opened, we're going to see a TON more of this over the next few years. DDF508 is a more difficult mutation to correct, but like I said, they already have 3 or 4 companies racing to find a solution! I can't imagine that we are more than 2 or 3 years away from that. I'm personally hoping for success with the 770/809 combo, since once 809 gets released, I imagine it will drop the price tag on Kalydeco substantially and make it much more available to everyone!

    I'm not one who usually gets my hopes up at all, and I still certainly don't think that Kalydeco is going to be anything like "the cure"... but holy cow, this is the hugest news in the CF community since before we were all born!!! It's made me much more hopeful for future things. I still don't necessarily think we'll see an actual "cure" in our lifetime, especially since a true cure would have to find a way to reverse permanent lung damage in us older folks... but for the time being, I'm perfectly content with this. :)

  4. Cindy, I think you're right. I feel like this is the big stepping off point for numerous other drugs now. The fact that they've found a way to treat the underlying problem, at all, is incredible. From here, the only direction is up. I get jaded sometimes because I feel like I've heard that the cure is right around the corner for too many years. Regardless, I do think that drugs which will greatly improve our lifespan ARE right around the corner; We just have to stay healthy enough to benefit from them.

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