Upcoming deadline for USACFA Scholarship!

We are extending the Spring 2018 deadline until November 15, 2017!

The United States Adult Cystic Fibrosis Association (“USACFA”) offers the Lauren Melissa Kelly Scholarship award each semester, in honor of Lauren Melissa Kelly. The scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Please find scholarship criteria and requirements on our website and direct any questions to scholarships@usacfa.org.


A fall 2017 scholarship recipient, Elizabeth Shea, has shared with us how her college experience has been shaped by having CF and all that she has been able to accomplish through the help of our scholarship and her dedication to hard work and passion in performing music.  In her own words:

As a winner of the USACFA scholarship for the fall semester of 2017, I am fortunate to have the opportunity to share some of my experiences as a college student with CF.  I thought it might be helpful to kids who are applying to colleges now, or those who are in college deciding on a major, to hear a little about what I’ve done and why.

First I should say I am now a junior at Stetson University.  I play flute and I am a double major: music education and music performance.  I added the second major at the end of my sophomore year.  I also joined the music sorority Sigma Alpha Iota in my sophomore year.  Both decisions have had a big impact on my life at college.

Music education was my original major, and believe me, it kept me very busy.  Between classes, private lessons, multiple ensemble rehearsals, mandatory recital attendance, private practice, classroom observations and studying, sometimes I hardly have time for lunch.  But, I knew that if I added a performance major, my playing ability would be seen as more competitive down the road when I’m applying to graduate school, or even in competing for a teaching job.  So, I went for it.

My decision to join a sorority was also significant.  Not only am I a member, I am now the treasurer of our chapter.  With weekly chapter meetings, events, executive board meetings, financial reports, banking, etc. I’ve had to dedicate a decent amount of time to SAI.  But the payoff has been great.  The sorority gives me an awesome group of close friends who all share my love of music.  I’m able to socialize with them and not just spend time in classes, performing and studying with them.  I’m also getting some valuable experience being in a leadership role with responsibilities that are new to me.

So, as you can imagine, I’m really, really busy this year.  I’ve had to be very careful to keep up with my medical treatments so that I can stay healthy.  Bottom line is, don’t assume that because of CF you have to limit yourself or skip things.  I might have to work a little harder to keep up with everything that I’ve added this year, but I am enjoying all the new challenges.  Of course, this year is also harder because I’m a junior performance major and so I am expected to perform at a higher level.  No pressure, right?  But I think I’m up for it.  Just try things and see what you can do.  You can always cut back if you end up overwhelmed, but if you don’t try, you will never know if you could have done it!


We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

By: Jacob Greene

Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. Continue reading We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

Perseverance, Resiliency and Erin Andrews

This morning I came across a story on MMQB about unbelievable year Erin Andrews is having.

As many may know, Erin Andrews, NFL on Fox’s lead sideline reporter, had been dealing with a crazed stalker in court. I cannot even imagine the stress that must Continue reading Perseverance, Resiliency and Erin Andrews

CALL TO ACTION – The Affordable Care Act

From the CFF…
We are sending this out today to let you know about an urgent need for action.  Wednesday, the Senate took a significant step toward repealing the Affordable Care Act. As critical health care reform decisions are made, it is essential that Continue reading CALL TO ACTION – The Affordable Care Act

Making it Matter Ep. #21

Making it Matter Ep. #21: Cystic Fibrosis as an Invisible Illness

Julia and I continue the conversation from our last podcast about cystic fibrosis as an invisible illness in the newest episode of the Making it Matter Podcast. What is an invisible illness, why is it such a challenge and how do we deal with Continue reading Making it Matter Ep. #21

Gunnar Esiason’s Guide to Gifts for Someone with CF

Christmas is just around the corner, so it is time to start working on those lists to send to Santa!

Here’s my holiday season gift guide for that special someone with cystic fibrosis in your life… or maybe someone without CF (if you somehow find Continue reading Gunnar Esiason’s Guide to Gifts for Someone with CF

Making it Matter Ep. 14

Making it Matter Ep. 14 – Advocacy and Other Things

After our week off, Julia and I come back with lots to talk about. Right after her NYC marathon effort, Julia shipped off to Europe to tour a children’s CF center in the Netherlands. She talks about how much different care is than Continue reading Making it Matter Ep. 14

What I Learn from CF — By Jen Weber

By Jen Weber

The other day I was lamenting how life was taking another detour due to a CF complication – that time I was being admitted unexpectedly, which meant cancelling fun weekend concert plans. I think it is so easy to get stuck focusing on Continue reading What I Learn from CF — By Jen Weber

Making it Matter Podcast Ep. 11

Making it Matter Podcast Ep. 11 – This Past Week

Julia and I catch up with each other about the last week. I had an encounter with a security guard a concert over my pill case, Julia talks about her New York City Marathon training and then we both give our opinion on my blog post about Continue reading Making it Matter Podcast Ep. 11

Cystic Fibrosis and “The Fault in Our Stars”

About a year ago CNN brought us the story of Dalton and Katie Prager, two young adults with cystic fibrosis who met on the Internet and went on to get married.

Their story, drawing plenty of similarities from the book and movie The Fault in Continue reading Cystic Fibrosis and “The Fault in Our Stars”