Check out Jerry Cahill’s new blog: Jerry Unplugged!

Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!

Who Am I?

I’m Delta F508. I’m R117H. I’m a cystic fibrosis patient. I’m post double-lung transplant by 5 years and 10 months.
I am all that and so much more. I am Jerry Cahill: athlete, coach, and friend. I have an unrivaled joie de vivre. I am positive, relentless, kind and generous. I am a man, who just happens to have cystic fibrosis. I don’t accept mediocrity. I never give up and always believe You Cannot Fail.
I was born one of six kids and, although I had CF, my parents treated me just like the others. After I was diagnosed, my mother wanted to shelter me, but my dad said, “If his life is going to be shorter, I want him to spend it with his brothers, having fun and being normal.” My dad believed that “you cannot fail as long as you try,” and I made it my life’s mantra.
I attended college and went to nationals in pole vaulting. It isn’t that I didn’t have issues because of CF, it’s just that I chose not to let them get in the way and be roadblocks. They were just detours on the way to my dreams. I went on to have a successful career while juggling the demands of CF. I never have and never will let the disease define me. The more it progressed, the more I pushed back.
Finally, nearly six years ago, at age 56, I needed a lung transplant and received one thanks to the unconditional love and generosity of a grieving family. I am grateful to my donor every day.  Continue reading…

Why I Do What I Do?

Because I can…
I believe in giving back & passing it on. I’ve been given a platform, so I use it to share what I’ve learned and experienced to benefit others. I really like the quote from the movie, The History Boys: “Pass the parcel. That’s sometimes all you can do. Take it, feel it, and pass it on. Not for me, not for you, but for someone, somewhere, one day.” I don’t do all this for myself; I do it to give hope to others, to inspire them to do more, fight harder, and be the best they can be. Everyone has limitations, but I want to inspire every person to go out and be the “hero of your own story.” Continue reading…

Doctor, Doctor!

I walked into the office the other day while Boomer was there and we began to make small talk. He asked how I was doing and I told him I had to see the doctor for my knee, because I’m having knee-replacement surgery in March. Boomer started to laugh and asked, “Just how many doctors do you have? You’re always seeing some doctor, and you act like it’s no big deal. You know, not everybody sees as many doctors as you do.”
“Boomer, I have CF! I’ve had a transplant. I have doctors but not that many, really,” I replied. Continue reading…

Three Ways CF Helps Me in My Career

Guest blog by: Reid D’Amico

Living with CF is hard. As I’ve gotten older, I’ve learned to pivot with many of CF’s new challenges. This has largely been an iterative process of successes and failures with plenty of feedback, patience, and assistance from friends and family. However, I’d like to focus on a few elements of CF that I believe have augmented my professionalism. These are elements that have taken time to develop, and are still being developed, but I believe that CF has provided a solid foundation for this professional growth. Continue reading Three Ways CF Helps Me in My Career

Sexual and Reproductive Health Resources

Looking for practical, up to date information about sexual and reproductive health for women and girls with CF?

Guides from puberty to incontinence to urinary tract infections to contraception and pregnancy address in detail many areas of sexual health and CF. To help you start the conversation,  share them with your CF team, pediatrician or gynecologist. Continue reading Sexual and Reproductive Health Resources

List of CF Patient Assistance Programs

Patient Assistance Programs

CREON® CFCareForward Patient Support Program offers nutritional services to eligible patients, as well as financial and educational support for patients and families.

Chiesi USA 
Chiesi USA offers prescription access support, financial assitance, and product counseling for patients taking BETHKIS® (Tobramycin Inhalation Solution) and PERTZYE® (pancrelipase) 

Genentech, Inc.
Genentech Access Solutions
Pulmozyme® Access Solutions Co-Pay Card Program

Cayston® Access Program

Novartis Pharmaceuticals
Patient Assistance Now (Spanish Speaking Services)

Vertex Pharmaceuticals
Vertex GPS: Guidance & Patient Support (Kalydeco® or ORKAMBI™)

Customer financial assistance program for patients using inCourage® airway clearance therapy.

Live 2 Thrive 
Live 2 Thrive Offers copay assistance, free vitamins and supplements, and nutritional information for eligible patients.


Foundation Care 
List of company assistance programs

Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF

Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage

Boomer Esiason Foundation
Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro 
Guidance for Californians facing hefty hospital bills 
Additional Patient Assistance Programs

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name)

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.

CF and Menopause—I have questions…

By Georgia Brown

As a woman with Cystic Fibrosis, at 47, I am considered old—but it is a title I relish.  It means I have weathered the CF storm and I look at each birthday as an accomplishment.  But as I enter the next phase of my life, I find I have more questions than answers.

While I don’t fear menopause necessarily, I do fear embarking on this life changing phase without understanding how CF puts its unique twist on it.  And that is why I am glad that I have found the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC).  Each month the group meets to discuss issues specific to women with CF.  Then CFReSHC uses the feedback from meeting participants to help shape future CF research.  This is one way, we, as patients, pave the way for improved sexual and reproductive healthcare.  

The next virtual meeting “Hormones Across the Lifespan” will be Thursday, February 22, 2018 from 11 am to 1:00 pm EST.  Dr. Raksha Jain of the University of Texas Southwestern will discuss how hormones affect women with CF from puberty to menopause.  Then, the CF women in attendance, will break into smaller groups to discuss personal stories and identify the top three hormone-related topics that need further research.  The meeting is open to all women with CF in the United States.  For more information on CFReSHC and for login information from your laptop, or mobile device, email CFReSHC at Women who attend receive a $25 gift card from Amazon.  

USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy. Continue reading USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

Congratulations to Our Scholarship Winners!

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship for the Spring of 2018.

In our evaluation, we look for students who demonstrate tremendous academic achievement, community involvement and a powerful understanding of how having CF matched with these achievements places them in a unique situation to gain leadership roles within the community. Our scholarship is open to all pursuing any degree, from associates to Ph.Ds. We believe that any higher education is a strong foundation for advocacy and involvement in CF.

We are pleased to announce Hannah Buck and Mary Grace Bernard as the recipients of this semesters’ scholarship. Congratulations to them! They will be awarded $2500 each.

Both of our recipients demonstrated the leadership, intelligence, and drive of Lauren Melissa Kelly. We at USACFA look forward to seeing them further develop their leadership and advocacy in the cystic fibrosis community.

We are also pleased to award runner-up scholarships in the amount of $250 to five deserving applicants: Elizabeth Shea, Chloe Creager, Rebekah Weigner, Holly Beasley and Christopher Davis, Jr.

We are excited to announce more scholarship opportunities coming soon! Please stay tuned for more information. For questions, please contact us at

Apply for the chance of a $10,000 scholarship!

The Sacks for CF Scholarship is related to quarterback sacks made during the NFL season. The undergraduate and graduate award is made annually to 30 people who strive for therapy adherence and academic success.

Continue reading Apply for the chance of a $10,000 scholarship!

Alcohol Usage in CF Population Survey Opportunity

My name is Erin Lowery, and I am an adult Cystic Fibrosis physician and assistant professor at Loyola University Chicago. My research focuses on alcohol use in people with lung disease, and I would like to better understand alcohol use in people with cystic fibrosis. I have been working with the CFF on a research project which involves looking at alcohol use in people with CF and how it impacts their health. As a first step in this project, we have created an anonymous survey. I hope that it gives us some insight into how people with CF are using alcohol and if it affects their health. Continue reading Alcohol Usage in CF Population Survey Opportunity