Wednesday, February 25, 2015

Why Great Strides is important to me

This is something I wrote last year before the Great Strides walk, and it still rings true. It is so very important for us a CF patients and families to step up and raise money. I'm starting my fundraising process on social media, and if you are interested in making a contribution, all you have to do is click on the picture below. 

As Great Strides has been creeping up on me, I've been thinking a lot about how far we have come even in the last 20 years. When I was diagnosed with cystic fibrosis in 1993, I was 6 years old. That in itself shows you where we were and how different things are now. Newborns are all screened for CF now. It is very rare for someone to slip through the cracks like I did. The life expectancy for those of us with the disease was around 15 years when my parents found out. They had never even heard of CF, but they knew that they would be doing everything in their power to fight this horrible disease.

When I was 10 years old, The Vest was a brand new thing. I still remember the day that I got it. I was so excited (a feeling I don't really have about it anymore). It was a huge deal because up until that moment, I had spent every morning and evening lying on a declined board while my parents pounded on my back and sides. I just remember hating every minute of it, and I know my parents felt horrible doing it.

Fast forward to a few years later, I was a freshman in high school in my honors biology class. We had a substitute, and there was a small excerpt in my textbook that we were reading out of about cystic fibrosis. At first, I was pretty excited to see CF mentioned in something... That excitement quickly faded when I began reading. I read that day that my life expectancy was 16 years. Keep in mind that I was 15 years old at the time, and my parents had never mentioned life expectancy before. They wanted me to live my life to the fullest, and that meant not worrying about how much longer I had to live. I was devastated, and it took a little time to work through that and to realize that a number in a book had no effect on me.

I used to spend an extra 20 minutes twice a day doing my TOBI treatments, and that is now in a podhaler form that takes no time at all. Kalydeco, the first drug to treat the underlying cause of cystic fibrosis, was approved in 2012. Clinical trials are ongoing for Kalydeco and VX-809 for those of us with deltaF508. There is an inhaled form of Vancomycin (an antibiotic used to combat MRSA which I grow in my lungs) in trials right now. 

There have been so many advances in the cystic fibrosis world, and it is mind blowing to think that children with CF now have so much more hope for the future than I had when I received my diagnosis. The life expectancy has gone up drastically from 15 to close to 40 years! What an amazing thing! That's only possible thanks to all of the money that has been raised over the years to help fund the research and advancements it has led to. That is why I work so hard to raise money for the Cystic Fibrosis Foundation. Some of the new things may not help my lung function get much higher than it is right now at 48%, but they could definitely keep the lung functions of those children from dropping so quickly to where mine are.

I urge you all to stand up for your loved one with CF. With so few people living with cystic fibrosis, if we don't fight it, who will? We are the biggest hope for the future in the battle against cystic fibrosis.


  1. Whats you're writing is right... The newborns even tested and it makes great difference then when we are born. And what you're writing about the life expectancy... its hard to hear at that age. But what i've learned then was to take the moment and enjoyed the fullest. Nice post!

    1. I completely agree! You have to live life to the fullest when you are dealing with cystic fibrosis. Thanks for reading! :)

    2. I actually now 2 families, who have sons with CF, it's heartbreaking. Also my former employer donated a larger amount every year to hire a research assistant at Johns Hopkins. I was proud to work for a company who was so involved. I'm again signed up for the Great Strides Walk this year (Fredericksburg VA) and hope to raise money through shoe charms I make. I have a hard time asking people for money, so I decided to be creative. One is a CF awareness ribbon, the other one is a shoe tag with the great strides logo. Would you mind sharing those on your blog and/or with friends and family? The more people know about it, the more we can raise. Thank you!!

      Here are the links:

      CF ribbon shoe tag:

      Great Strides shoe tag:

    3. I would love to share! Thank you for reading and posting! And a big thank you for the work that you are doing to raise money for CF!