Sunday, February 26, 2012
I am truly blessed to be surrounded by people who really care about me and making a difference in the CF world. I have been blown away by the generous donations that have already come in from my friends and family. I have already raised $1,078!!! That is huge! This time last year, I only had $685 raised. I am extremely proud of what I've accomplished so far, but as usual with me, I'm not anywhere near done. I have set a goal of $3,000 for myself, and $7,000 for my team. So there is still a lot of work to be done.
So what can you do???
Do you have maybe a couple of dollars that are unspoken for? If you do, click the picture below and find the "Click to donate" button at the top of my donation page. When I say that no amount is too small, I truly mean it. Every little bit helps and adds up. Almost 90 cents of every dollar go straight to funding research to find new drugs, treatments, and maybe one day, a cure for those of us who have cystic fibrosis. Share the link with your friends and family to see if they would like the opportunity to make a difference.
Want to join my team and fund-raise yourself? Click on the picture below that will take you to my donation page. Find the "Join my team" button. You can set a goal for yourself and begin asking those around you for donations.
Want to join my team and walk, but you don't feel comfortable fund-raising? Click on the picture below. Find the "Join my team" button. It will automatically set a goal for you to raise, but you don't have to raise that. It is their way of trying to encourage everyone to raise money.
You can also come to the walk even if you haven't registered. Last year, my team had 10 people at the walk. I would love to double that. So, if you don't have anything going on May 12, at 10:00 in the morning, come out and support my team! :)
If you have already made a contribution to my cause, I thank you from the bottom of my heart. I can never really express how truly grateful I am for all that you have done. If you are going to be walking with me in May, I am so excited that you will get to experience something that is so important and close to my heart. If you are still on the fence about making a donation, keep thinking about it. If you have any questions about where your money is going or what exactly all of this is about, please feel free to ask. To sum all of this up... Thank you! Thank you! Thank you!
Saturday, February 18, 2012
Also, check out this amazing story about high school students who dedicated their time and effort to raising money for the CF Foundation. Here is the article.
Finally, you know I have to. If you are interested in making a donation to support me in the Great Strides Walk coming up in May, just click the Great Strides picture to the left. It will take you to my donation website! Thanks everyone!
Monday, February 13, 2012
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.
Friday, February 3, 2012
When you make a donation, almost 90 cents of every dollar go straight to funding research to find new medicines and treatments, and hopefully, one day, a cure. There have been huge steps forward lately in the fight against cystic fibrosis, and that has a lot to do with all of the donations that have been so generously given. Last year was the first year that there were more adults alive with CF than children. That's huge!!! That means that because of all the innovative treatments now available to those with the disease, we are living longer. Also, just this week, a new drug that treats the actual cause of cystic fibrosis instead of just the symptoms. It is called Kalydeco, and it is truly a first. Kalydeco only benefits about 4% of people with CF which I am unfortunately not a part of. Researchers are working on a combination of Kalydeco and another drug to treat those who have the most common mutation.... ME!
Every donation is greatly appreciated, and no amount is too small!
Last year, my team had 10 people at the walk, but I would love to see that number increase! You don't have to donate or raise money to be a part of my team. Everyone is welcome! If you are interested in joining me at the walk, let me know, and I can send you some more information.
If you are interested in joining my team and raising money, just click on the donate now link to go to my donation page. Then you click on join my team, and it will guide you through registering and setting a fund raising goal.
Finally, I am ordering shirts for my team this year. I am charging $20 for them, and any money left over after paying for them will go straight to CF. I will be ordering them at the end of March, so if you are interested in getting one, let me know. Here is what they look like.
Thursday, February 2, 2012
This is a blog award that Jenna gave me. Liebster is German for favorite or dearest. It means a lot to me that she reads and enjoys my blog. With the award comes some rules.... so here we go:
1) Acknowledge the blogger who gave you the award by linking back to them.
That was Jenna, and here is the link to her blog.
2) Give this award to 5 other bloggers who have fewer than 200 readers. Let them know through a comment on their blog. They are listed below.
3) Post this wonderful award on your blog. See cute badge above. If you're confused about how to do this, simply right-click on the image and save it; then, upload it as you would normally add a picture to a blog post.
4) Bask in the glory bestowed upon you and appreciate all the amazing bloggers out there.
Here are the winners that I have chosen:
- *Live*Laugh*Love*Breathe*- Colleen is another Cyster sharing her story about how she is living with cystic fibrosis. Her posts are so great to read, and she is incredibly motivating.
- Jamiebug- Jamie is an amazing inspiration. She received a lung transplant a little over 4 years ago, and her story blows me away.
- Breathe Easy- Jessi is a Cyster who is fighting CF with all she has. She is on the waiting list for a double lung transplant, and she is another person who serves as a huge inspiration to me.
- Notes to Self- My good friend, Lacey is spending the year in Uganda, and this is a blog about her adventures. She is adorable, and her story is really great!
- Life with my Boys- Marla is my sister-in-law, and she shares stories of her life with my two nephews.
Wednesday, February 1, 2012
At my last appointment in October, I was at 54%. Today, I blew a 63%!!! The work paid off, and I feel fantastic! I have never been so proud of myself or of my PFT, but I'm not stopping there. I already have a new goal in mind for my next appointment. I am shooting for 70%. My doctor thinks that it is possible, and I have a really good feeling about it.
My doctor asked me during my appointment today what had made me decide to work this hard to get my numbers up. I had to think about that, because there isn't just one reason. There is a whole list of things that has led to my motivation.
- Child-- I want to have a child. I want the experience of being pregnant and of holding my baby for the first time. I can only do that if I am healthy enough to go through a pregnancy.
- Eldon--I have an amazing husband, and frankly, I am not ready to leave him yet! I want to spend as much time with him as possible. I owe it to him to try to stick around.
- Family and Friends-- I have a huge amount of people supporting me in my fight against CF. I would be letting them down if I didn't fight with all I had.
- Quality of Life--When I work out and do all of my treatments, I feel so much better. Yes, I spend a ton of time making sure I stay healthy, but the pros outweigh the cons.
- Accomplishment-- Giving myself a goal to work towards and meeting that goal makes me feel like I am really accomplishing something.
- Motivating Others-- If someone reads my story and sees the difference that some dedication can make, maybe that person will be motivated to do the same thing.
- Beat CF-- I want more than anything to beat CF. I want to live a long life.... not a long life for someone with CF.
- New Treatments-- I want the opportunity to see what exciting new treatments are in store for those of us with CF.
- Raise Money and Awareness-- I want to see the day when I tell the average person I have cystic fibrosis, he/she knows what I am talking about. Most of the time, there is a need to explain what CF is if it comes up in conversation now. I would also love to raise as much money as I can so that we will see a cure.... maybe even in my lifetime.