We Are Ready to Make Our Voices Heard

A top priority for the next administration and Congress is health care reform. As an adult living with cystic fibrosis, I've been wondering what this will mean for me, our community and our ability to access high-quality, affordable care.

Nov. 30, 2016 | 3 min read
KC White
KC White

We don't know yet how our health care might change, which leaves us with uncertainty -- a feeling our community knows all too well. We do, however, have something we can count on and that is the power of our collective voices. We are an incredibly strong group of individuals. Cystic fibrosis is insidious and yet we rise to the occasion every day to confront any challenge CF may bring. Rallying together for the good of the community is part of our DNA.

The CF Foundation was founded by a group of parents who wanted a better outcome for their children and all those with CF. As a community, we have followed their lead by coming together to advocate for our unique needs. We have raised millions of dollars that have allowed the Foundation to fund the science that has led to new treatments. We have joined together at chapter events across the country spreading a message of urgency and hope. This fall, hundreds of adults with CF came together at BreatheCon -- our first ever virtual conference for adults with CF. As a community, we have proven over and over that we are better together.

I have the honor of serving as a Trustee on the National Board of the Foundation. At our most recent board meeting, our first order of business was to talk about the possible changes in the health care landscape and what we can do as a Foundation to ensure that the needs of the CF community are heard loud and clear. Read more about that work here.

We have worked hand-in-hand for over 60 years to change the trajectory of this disease. I am grateful to all of you for how much we have accomplished together. And I have no doubt we are ready to represent the needs of our community to a new administration over the next four years.

Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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KC White

KC is the chair of the National Board of Trustees for the Cystic Fibrosis Foundation and serves on the CF Foundation Adult Advisory Council. In the summer of 2001, she threw out the first pitch at every Major League Baseball stadium to raise awareness and funds for the CF Foundation. KC lives in her hometown of Chagrin Falls, Ohio, with her husband, Justin, and their son, Mac. 

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