A couple of months ago, I posted about the new CF treatment that would benefit 4% of the patients with Cystic Fibrosis. Well, the Cystic Fibrosis Foundation just made another exciting announcement. They have now signed on with the same company to make treatments for the Delta F508 gene mutation which is the most common CF mutation (I am one of those). This type of news give me hope that life really might get a little easier for those of us with CF someday. Anyway, here is the article:
CF Foundation Announces Investment to Speed Development of Additional Drugs to Treat the Most Common CF Mutation
April 7, 2011
Today the Cystic Fibrosis Foundation announced the expansion of its collaboration with Vertex Pharmaceuticals for the discovery and development of additional drugs aimed at treating the underlying cause of cystic fibrosis.
The new program will support development of a potential new drug called VX-661, designed to treat people with the most common genetic defect in CF, the Delta F508 mutation. Nearly 90 percent of people with CF in the United States have at least one copy of this mutation.
VX-661 is known as a “corrector” and aims to move the defective CF protein to its proper place at the cell surface. Another corrector, known as VX-809, is already in clinical trials. By developing multiple correctors, the Foundation increases the chances of bringing new therapies to the CF community as quickly as possible.
“This new agreement will further leverage the successful collaboration with Vertex to accelerate the discovery and development of new drugs to treat a wide variety of CF patients,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “Given the recent announcement of promising data of other compounds in the CF pipeline, we’re optimistic that the CF Foundation is on the right path to fundamentally change the treatment of CF by targeting the cause of the disease.”
The Foundation’s investment, which will be up to $75 million over five years, will also expedite the discovery and early development of other new correctors.
“The CF Foundation is widely recognized by doctors, nurses, scientists and those with CF as a driving force in the search for new CF medicines, and we are pleased to further expand our strong collaboration with them,” said Matthew Emmens, chairman, president and chief executive officer of Vertex. “The collaboration announced today underscores our commitment to CF and accelerates our efforts to develop new medicines as quickly as possible for people with the most common type of this disease.”
With the Foundation’s expanded support, Vertex plans to begin a Phase 2 study of VX-661 by the end of 2011 and expects to enroll people with CF who have the Delta F508 mutation.
A Phase 2 clinical trial is underway to test combinations of VX-770 and VX-809 in individuals with two copies of Delta F508 mutation. Data from the first part of this trial is expected in the middle of 2011.
Read the Vertex Pharmaceuticals press release about the announcement.
As always, you can go to the Cystic Fibrosis Foundation website for more information.
To make a contribution to my Great Strides team, just click here. Every little bit is greatly appreciated, and over 90 cents of ever dollar go straight to research. It's worth every penny! :)
Thursday, April 7, 2011
Tuesday, April 5, 2011
53 more days left....
Apparently, I have let the updating the blog slip a little bit. I have been crazy busy with going home almost every weekend doing stuff for my wedding. So, instead of doing a post about CF today, I thought I would update you all on how the wedding planning is going! For those of you who don't know, I have been engaged to Eldon since July 15, 2008... 2 years and 4 months. That is a long time to be waiting for a wedding to roll around, and I don't suggest anyone else to do that. Eldon and I are in this awesome place filled with a ton of excitement! It is finally almost here, and we just cannot wait!
So, I have been slowly planning stuff from the beginning. The first thing I bought, was my dress which I am still in love with! Sorry, I won't post a picture of it yet! :) That's a surprise. My wonderful bridesmaids will be wearing light blue dresses. The color is called pool, and it is almost like a Tiffany blue. The flowers are going to be orange. My bouquet will have calla lilies with something extra to add some flair! The bridesmaid bouquets will have orange mini roses and gerbera daisies.
Right now, we are in the process of picking the music ceremony. That is really hard to do, so if anyone has any suggestions for some good Christian music to use in the ceremony, let me know. We are not going to traditional with the music.
The invitations went out on Saturday, and that finally made this whole thing feel real! Hopefully, it will be beautiful and fun, but if it's not, that is okay. I will be married, and that is all that matters to me at this point! Sorry this post was kind of pointless, but wedding stuff is all I have been thinking about lately. So, I thought I would share.
So, I have been slowly planning stuff from the beginning. The first thing I bought, was my dress which I am still in love with! Sorry, I won't post a picture of it yet! :) That's a surprise. My wonderful bridesmaids will be wearing light blue dresses. The color is called pool, and it is almost like a Tiffany blue. The flowers are going to be orange. My bouquet will have calla lilies with something extra to add some flair! The bridesmaid bouquets will have orange mini roses and gerbera daisies.
The invitations went out on Saturday, and that finally made this whole thing feel real! Hopefully, it will be beautiful and fun, but if it's not, that is okay. I will be married, and that is all that matters to me at this point! Sorry this post was kind of pointless, but wedding stuff is all I have been thinking about lately. So, I thought I would share.
Sunday, March 27, 2011
Lack of Understanding
I'm sure people wonder why I would start a blog about life with Cystic Fibrosis, and I have touched a little bit on some of my reasons in earlier posts. In reality, there quite a few reasons to start this. I was talking with my mom the other day, and one of those reasons that I hadn't really thought about before became extremely clear. Through talking with people and hearing the questions that are asked about the disease, I have noticed that the information presented to those who are not affected by CF is very limited and often times, flawed. My mom is a dental hygienist, and she talks to her patients about my sister and I all the time. It is truly amazing how many people ask her how I am doing with my CF, and then follow up with a statement like, "Oh, I'm sure she will get over it soon," or "She will grow out of it." This, of course, is not in any way them being insensitive. It is just an honest lack of understanding of what Cystic Fibrosis truly is. I have also had people ask when I caught CF. There have been times when people were scared that they would catch the disease if they were around a person with it. That isn't common now, but I'm sure it is still out there.
I want my blog to serve as a place to find real life information about Cystic Fibrosis. Most of the stuff on my blog is not about science, but it actually paints a picture of what life is like with CF. I have found that a lot of times, when I tell someone that I have CF, they want to know what it is, but they really want to know what it means to have it. What kinds of medications do I have to use? What worries does having the disease cause? The big question: How long will you live? (Obviously, I don't have the answer to that question, but I know it runs through people's minds.) I have made it my goal to answer those questions and any others that people may have about Cystic Fibrosis, because people need honest answers especially when so many resources portray it inaccurately.
The first example of this that comes to mind is the Grey's Anatomy episode which I wrote about earlier. That is a very popular show that has a lot of influence over it's viewers. The least they could do, was research the material and make it educational as well as entertaining. I found one really surprising inaccurate portrayal of CF in my honors biology text book freshman year of high school. There wasn't much about it, but it did have a little section about the controversy that supposedly surrounds giving CF patients new lungs. The author reported that some people think that it is wrong to give those patients healthy lungs when the lungs will just clog right back up with mucus. Now, I am definitely not an expert on lung transplants, because I have not done a ton of research on it, but it is my understanding that once you get new lungs, they stay clear. The issues and worries come with rejection and catching illnesses. (Please correct me if I am wrong, and add anything that I haven't mentioned if you have anything else.) I was horrified when I read it, because back then, I knew even less about the topic than I do now. I was upset, because I didn't like the idea of going through a transplant, and then just getting right back to how I was. If I was fooled by the information being presented, it is a pretty safe bet that every student who read that section was. I find it very disturbing and sad to know that there were (I'm not sure if those books are still being used) educational text books spreading untrue things about CF to students.
So basically, I want to start to change all of that. I want to offer information to people so that misconceptions are less, and my friends and family can really understand what it is that I live with. If you have any questions or comments, or just want to talk to me about issues with CF, please feel free to email me by clicking here!
I want my blog to serve as a place to find real life information about Cystic Fibrosis. Most of the stuff on my blog is not about science, but it actually paints a picture of what life is like with CF. I have found that a lot of times, when I tell someone that I have CF, they want to know what it is, but they really want to know what it means to have it. What kinds of medications do I have to use? What worries does having the disease cause? The big question: How long will you live? (Obviously, I don't have the answer to that question, but I know it runs through people's minds.) I have made it my goal to answer those questions and any others that people may have about Cystic Fibrosis, because people need honest answers especially when so many resources portray it inaccurately.
The first example of this that comes to mind is the Grey's Anatomy episode which I wrote about earlier. That is a very popular show that has a lot of influence over it's viewers. The least they could do, was research the material and make it educational as well as entertaining. I found one really surprising inaccurate portrayal of CF in my honors biology text book freshman year of high school. There wasn't much about it, but it did have a little section about the controversy that supposedly surrounds giving CF patients new lungs. The author reported that some people think that it is wrong to give those patients healthy lungs when the lungs will just clog right back up with mucus. Now, I am definitely not an expert on lung transplants, because I have not done a ton of research on it, but it is my understanding that once you get new lungs, they stay clear. The issues and worries come with rejection and catching illnesses. (Please correct me if I am wrong, and add anything that I haven't mentioned if you have anything else.) I was horrified when I read it, because back then, I knew even less about the topic than I do now. I was upset, because I didn't like the idea of going through a transplant, and then just getting right back to how I was. If I was fooled by the information being presented, it is a pretty safe bet that every student who read that section was. I find it very disturbing and sad to know that there were (I'm not sure if those books are still being used) educational text books spreading untrue things about CF to students.
So basically, I want to start to change all of that. I want to offer information to people so that misconceptions are less, and my friends and family can really understand what it is that I live with. If you have any questions or comments, or just want to talk to me about issues with CF, please feel free to email me by clicking here!
Monday, March 21, 2011
1st Run/Walk
Well, I did it! I did my first run which was mostly walking, but that doesn't matter to me! I actually got up and did it which is a huge step for me! I have added a widget where I will keep you posted on how far I run, how long I run, and how often it takes me. Hopefully, we will see a lot of improvement as I go along. I know there sure is room for some! Thanks for keeping me accountable! :)
Sunday, March 20, 2011
Running
I've been going back and forth for awhile trying to figure out the best form of exercise for me and my health. Obviously, strength training is an important aspect for me, but the most important thing for my lungs is cardio. So what kind of cardio would be best? After reading many other CFers' blogs and comments about working out, I have come to the conclusion that I need to start running. It is one of the most beneficial forms of working out for your lungs, but that raises a few questions. How do I start running? What kind of shoes do I need to get? When will I run? Where will I run? I have found a program that I think will be good for me, but now I just need to find the motivation to start.
That's a difficult thing for me, because I have tried to run in the past. It is painful and challenging, and I usually just give up. My health is at the point now that I cannot give up this time. I need to stick with it and make it work. I plan on starting this week since I only have half days of work which takes away the excuse of not having time to run. I decided to write about it, because if I need to keep you all informed on my progress, it will keep me accountable for actually going out and doing it. Tomorrow will be my first day. We'll see how this goes. Wish me luck!
That's a difficult thing for me, because I have tried to run in the past. It is painful and challenging, and I usually just give up. My health is at the point now that I cannot give up this time. I need to stick with it and make it work. I plan on starting this week since I only have half days of work which takes away the excuse of not having time to run. I decided to write about it, because if I need to keep you all informed on my progress, it will keep me accountable for actually going out and doing it. Tomorrow will be my first day. We'll see how this goes. Wish me luck!
Thursday, March 17, 2011
My Biggest CF Frustration
This post doesn't have much to it, but it is something that has been weighing on my heart and dragging me down lately. Ever since I made the decision to really start fighting Cystic Fibrosis, I have been looking more towards the future and what God might have in store for me. Now, normally, this is an uplifting, inspiring thing for me. I envision teaching in my own classroom, having a child with Eldon, and living life to the fullest. It makes me want to fight even more for those high PFT numbers that seem so out of reach right now.
The problem comes when I start seeing the negative side of the fight. (Before you get too worried, this is not a post about dying. I'm not feeling that blue at the moment.) My greatest frustration caused by Cystic Fibrosis (at least right now) is the fact that no matter how hard I fight, I can never stop fighting. When I make it to my goal, there is no break. I have to keep fighting non-stop or my lung function will go right back down. Then, that takes away what I was working for in the first place. What's more? Even if I keep fighting without faltering even a tiny bit, my numbers will go down eventually. That's the nature of the beast, and it is one of the worst parts of the disease for me. It's times like these that it is hard to motivate myself to continue the fight when I see I'm on the losing side.
It's also times like these that I appreciate everything that I have so much more. I look at my life and see the reasons to continue fighting. I am marrying my best friend in 72 days! I have amazing family and friends, and all of those people make my life worth fighting for!
Just look at all of those people, and there are so many more important people in my life! God has really blessed me with the perfect team to help me fight as long and as hard as I can!
The problem comes when I start seeing the negative side of the fight. (Before you get too worried, this is not a post about dying. I'm not feeling that blue at the moment.) My greatest frustration caused by Cystic Fibrosis (at least right now) is the fact that no matter how hard I fight, I can never stop fighting. When I make it to my goal, there is no break. I have to keep fighting non-stop or my lung function will go right back down. Then, that takes away what I was working for in the first place. What's more? Even if I keep fighting without faltering even a tiny bit, my numbers will go down eventually. That's the nature of the beast, and it is one of the worst parts of the disease for me. It's times like these that it is hard to motivate myself to continue the fight when I see I'm on the losing side.
It's also times like these that I appreciate everything that I have so much more. I look at my life and see the reasons to continue fighting. I am marrying my best friend in 72 days! I have amazing family and friends, and all of those people make my life worth fighting for!
Monday, March 7, 2011
Cystic Fibrosis Loneliness
Cystic Fibrosis is a very lonely disease. Up until a couple of months ago, I only knew a few people who have it. They used to have camps that CF patients could go to where you could meet other kids going through the same thing and enjoy each other's company. I never got the chance to experience one of those camps, because they got rid of them before I was even diagnosed. Why? Due to our thicker, stickier mucus, people with CF are much more likely to get "bugs" or bacteria growing in the lungs. Those bugs can make anyone sick, but to a CFer, they can be deadly. Doctors decided that CF camps were too risky, because if one person had a bad bacteria, it could spread like wildfire, making a lot of people sick.
If you are a Grey's Anatomy fan, you might have seen the episode a few weeks ago that touched on this subject. Long story short, two CF patients were at the hospital. The man was there for a lung transplant. When the doctors found out that the girlfriend had Cystic Fibrosis as well, they told him they had to break up, or he could not have the lungs. That episode has been a huge topic of discussion around the CF community. I won't go into all the points put forth, but I will say that it was very unrealistic. First of all, lung transplants are major procedures, and they make sure you have a major support system before you can even be put on the list. There is no way a transplant doctor would make the guy's only supporter leave right before the surgery. Second, I don't believe that anyone can give you an ultimatum like that... doctor or not. I'm interested in what you all think about the subject. If you have anything to add, please leave a comment!
If you are a Grey's Anatomy fan, you might have seen the episode a few weeks ago that touched on this subject. Long story short, two CF patients were at the hospital. The man was there for a lung transplant. When the doctors found out that the girlfriend had Cystic Fibrosis as well, they told him they had to break up, or he could not have the lungs. That episode has been a huge topic of discussion around the CF community. I won't go into all the points put forth, but I will say that it was very unrealistic. First of all, lung transplants are major procedures, and they make sure you have a major support system before you can even be put on the list. There is no way a transplant doctor would make the guy's only supporter leave right before the surgery. Second, I don't believe that anyone can give you an ultimatum like that... doctor or not. I'm interested in what you all think about the subject. If you have anything to add, please leave a comment!
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