Point of View

Written by: Kristy O’Connell!

In February of 2012, I took my first dose of Kalydeco, the blue tablet worth thousands of dollars that would dramatically impact the quality of life for years to come. Now, more than five years later, I’ve completed college, traveled to four different countries and have begun working and developing plans to eventually go to grad school.

I always tell people who are new to the CF community that if any time is the time to have cystic fibrosis, it’s now. I am amazed at how effective Kalydeco has been and how little CF affects my life anymore. Realizing the difference between what my life was and what it is now is like a dream.

The quality of life for individuals with cystic fibrosis is constantly improving – I see it with my own eyes every single day in my own life and with those I connect with on social media.

In less than a decade, thousands of lives have been changed thanks to the development of new drugs like Kalydeco and Orkambi; new therapies like Cayston and the TOBI Podhaler; and even new research on holistic-health methods, like salt therapy and the power of exercise.

It’s important to realize, however, that these medicines and life- changing therapies don’t just pop out of thin air.

I never thought I would see such a drastic miracle in my lifetime, but here I am, and I attribute it to organizations like the Cystic Fibrosis Foundation and the efforts of individuals with CF, their friends and

Those of us connected to the CF community need to direct our energies toward empowering the organizations that work towards finding a cure.

There are so many ways to support finding a cure for CF. Since I have a background in writing, I began my own personal blog in which I write articles about inspiring individuals with CF. Many of the individuals I write about host fundraisers or partake in challenges to raise awareness, so I am happy to assist them, and in turn, benefit the community.

Even so, there is so much more that can be done aside from making donations and fundraising. And of course, you can always reach out to your local CFF chapter to learn more about how you can participate.

While cystic fibrosis can be unpredictable and scary, there are things we can do to put control back in our own hands – look how far we’ve come already by doing just that!

Rather than standing by and waiting for something to be done, we must continue to work as a community to advocate for research and to keep cystic fibrosis in the public eye.

With the miracle of Kalydeco that I have experienced, I believe more than ever that a cure is no longer a pipe-dream.

So with that, I invite you as a CFer, a family member, friend or acquaintance of someone with cystic fibrosis, to join me in contributing towards a cure, raising awareness, and putting control back in the hands of those who need it.