2012 Great Strides Walk

Today was the Great Strides Walk in Knoxville, and it was amazing! It was definitely one of the biggest turnouts I've seen in awhile. There were a lot of team t-shirts, and it was so fun seeing everyone supporting those of us with CF. My team had a total of 25 people and 2 dogs! That's the most we've ever had! I felt so loved and supported!



Before the walk started, my family and I were recognized for continuing to participate in the Great Strides Walk every year and for putting in so much hard work into raising money. They informed us that in the last 7 years, we have raised over $50,000! That's only possible thanks to our very generous family and friends. And that's only a fraction of the years we have been participating. My parents started raising money the year I got diagnosed. That was 18 years ago! I'm so thankful to have parents who have instilled in me the importance of being involved with raising money and awareness for cystic fibrosis. In my mind, if I want to see a cure, you better believe I'm going to do everything in my power to make that happen as soon as possible.

Kayla's Krusaders got to start the walk! Here we are getting ready to go.

Here are a couple of pictures of the actual walk.

As of right now, Kayla's Krusaders has raised a little over $7,000 with a little more expected to arrive late! I can't even begin to express how thankful I am that I have so many generous people in my life! Thank you to everyone who made a donation or bought a t-shirt! And thank you to everyone who came out to the walk to show their support. Here are a few more pictures of Kayla's Krusaders.

Job News

It's been awhile... Life is crazy busy, but I do have some extremely exciting news! I have been applying for teaching jobs in Murfreesboro for 2 years now. This year, Eldon and I decided that I should expand my job search to Knoxville since that is where we want to end up anyways. I was a little hesitant, because he doesn't graduate until December which would mean that there would be a chance of us having to do long distance again. We had a long discussion about it and decided that since we did 3 years of long distance, we could handle a few months if I happened to get a job.

I had a few interviews at a couple of Knox County schools, but there was only one school that I really wanted to get a teaching position at. My sister-in-law works at the school so I had volunteered there and used her class for some of my assignments in college. The school quickly became my dream school because I loved everything about it. I love the student population and the staff. Long story short, I got a job offer at my dream school on Monday! I will be a 4th grade teacher for the 2012-2013 school year, and I could not be more excited!!!

In other news, it's the end of April which means the Great Strides walk is approaching quickly. There is still time to make a donation, and every little bit is appreciated! If you are interested in helping out just click here. It will take you to my personal Great Strides page.

Also, next week in my CF Clinic appointment. I have no idea where my PFT's will be this time. If you recall, my last visit was amazing. My numbers were up, and I was super excited. Since then, life has been crazy, and allergies have been awful. I'm hopeful that they won't go down at all, but I guess we will see.

Happy Friday everyone!

April Already?

I cannot believe that it's already April! 2012 is going by fast, and my goal of writing more blog posts has gotten away from me a little. Things have been crazy busy lately. I am still looking for a teaching job, but I have opened up more options for myself. I'm hopeful that the 2012-2013 school year will be my first year in a classroom. So I have been working on applications and other things involved with finding a job which has been overwhelming, scary, and exciting all at the same time.

I got in my first order of t-shirts, and they look great! I already have 4 more people who want to get a shirt. I have to have a minimum of 12 orders to make another order. If you would like to order one, please let me know. They are $20 each with any extra money going straight to the Cystic Fibrosis Foundation. Once I get everyone's money from the first order, I will be donating a little over $200 thanks to the left over money! So please think about getting a shirt. It really is making a difference, and you get a fun shirt out of it. :)

If you aren't interested in a shirt, you can also just make a donation to the CFF. You can do that by clicking on the link to my donation page. Kayla's Great Strides Page Please do not think that the amount you can afford to donate is too small. There is no such thing. It all adds up and adds tomorrows for those of us who have the disease. The walk is May 12, and I still have quite a ways to go towards my goal.

Happy Wednesday everybody!

Interview with Robert Beall

Here is an interview with the president of the Cystic Fibrosis Foundation. He gives a little input about their methods of getting things done in the research community. Straight talk with... Robert Beall

Shampoo, Rinse, Repeat

 I know I am repeating myself all the time with all of this fund-raising stuff, but here is why. Most of my goals in life surround the sole purpose of beating cystic fibrosis. I want to have children, live a long life, exercise, raise my PFT scores, etc... How can I consider myself a warrior against this awful disease if I am only fighting it in my personal life? I want to fight CF in every way possible. I want my hard work to go towards the health of more people than just myself. I want the cystic fibrosis community as a whole to benefit from my efforts. That is why I put everything I have into raising money for the walk. That being said, here are some more of my efforts being put forth. :)

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! :)

Finally, I am ordering t-shirts this year for my team, Kayla's Krusaders. This is something I have wanted to do for years, and I am so excited about actually doing it this year. I am charging $20 for the shirt. The more shirts I order, the smaller the actual cost will be. If the shirts cost less than $20 a piece, I will be donating the extra money to the Cystic Fibrosis Foundation. If you would like to order a shirt, please let me know. I will be ordering the shirts at the end of March.

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!

Fund-Raising

Alright everyone, here is an opportunity to get some money for the Cystic Fibrosis Foundation. All you have to do is click on the link, and vote for Kevin Willard in the East Region. The coach who wins gets $100,000 donated to his charity of choice. Coach Willard has chosen the CF Foundation. So, take a couple minutes out of your day to vote everyday. Voting ends Feb. 27, and Coach Willard needs a lot more votes to have a chance at winning.

 

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!

Hope

This past weekend was such a wonderful weekend! As I have for the past 3 years the weekend before the Valentine's Day, I went to the Cure Finders' "A Special Evening... A Special Cause." It is a fancy dinner and dance complete with silent and live auctions in Pigeon Forge. I always enjoy dressing up to go to this fund raiser, but the best part of the weekend came earlier that day.

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.