University of Chicago CF Center Patient & Family Advisory Board

04/02/2026

The FDA has expanded approval for Trikafta (ages 2+) and Alyftrek (ages 6+) to treat people with CF who have any CFTR gene mutation that produces a CFTR protein. This means about 800 more people in the U.S. will be eligible to take these CFTR modulator therapies.

04/02/2026

Hi Everyone! 👋

It's that time of year again... Great Strides is almost here! 👟

For those who don't know, here is some information on the event, taken from the CFF website:

"Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event, which supports our mission to cure cystic fibrosis, a progressive genetic disease that affects the lungs, pancreas, and other organs. While progress has been made, we still lose precious lives to CF every year.

You can help end cystic fibrosis by joining us at a Great Strides Walk near you. Every year thousands of people unite at nearly 300 walks across the country to support our goal of ending this disease.

During this fun-filled day, friends, families, colleagues, and others come together to drive progress forward. CF families feel renewed hope as their community rallies around them. Some even refer to it as the best day of the year - a memorable moment to connect while making a meaningful impact.

Your participation is crucial in helping us reach our dream of a CF cure. To achieve this goal, more research is essential, requiring a very substantial investment. Even after a cure is found, customized care will be needed for generations to treat long-lasting health problems, making continued donor support vital. Fundraising is critical to advance our mission, and now is the time to act. Help us find a cure for cystic fibrosis."

Our CF center will have a tent set-up at Chicago - Montrose Harbor (Grove 16) on May 17, 2026 at 10 AM. We hope to see some of you there! Of course, feel free to register for walks at other locations as well!

Here is the link to register or donate:

Help support Cystic Fibrosis Foundation today!

03/09/2026

Hi Everyone! 🙂

Just a reminder to those who can make it that we have our next University of Chicago CF Center - Patient & Family Advisory Board (PFAB) Meeting tonight (Monday, 3-9-26) at 5:30 PM (CST) via Zoom. Here is the login information:

• Link: https://uchicago.zoom.us/j/96757139714?pwd=TTBDREQyUW9KeXYzRnd0REo5eThUdz09
• Meeting ID: 967 5713 9714
• Passcode: abc12345

We look forward to hopefully seeing you soon!

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01/24/2026

With extreme cold conditions developing tonight, it is important to take steps to prevent frostbite. Learn more link in comments.

01/13/2026

Hi Everyone! 👋🙂
Reminder: There is a PFAB Meeting hosted by a CF Center in Texas TONIGHT (Tuesday, 1-13-26) at 6 PM (CST) via Google Meet. Please feel free to login, introduce yourselves, listen-in, and ask questions to learn more about how PFAB meetings are run and how the PFAB operates. Here is the log-in information:
- Link: https://meet.google.com/jgm-qfgc-ikq
- Join by phone: Phone: 724-755-3071, PIN: 473381356

If you are able to attend, please take notes and report back to the group at our next University of Chicago CF Center- PFAB Meeting (Monday, 3-9-26 at 5:30 PM (CST) via Zoom).

01/02/2026

Kathy Frey struggled with lung infections for years, and lived with a misdiagnosis for almost two decades. It wasn’t until her brother was diagnosed with cystic fibrosis that she finally got answers, and the treatment she needed. Kathy used this experience as motivation to advocate for others — writing to all her previous doctors about her diagnosis in the hope that it will help them recognize the symptoms in future patients.

12/26/2025

Christina Marioneaux delayed starting Pulmozyme for weeks because of her medication anxiety. When she finally started the treatment, she was thrilled at how well it worked.

“As I look back on this experience, I now realize how scary starting a new medication can be and how important it is to just try. I learned I need to just trust my doctors and give it a go. Things may need an adjustment, but as new medications and treatments come out to treat our cystic fibrosis, it is important to keep an open mind and just go for it.”

12/24/2025

12/24/2025

Hi Everyone! 🙂

Attached are slides from the PFAB Meeting on 12-15-25.

Please mark your calendars for these upcoming meetings in January and March:

CF Center in Texas – Tuesday, 1-13-26 at 6 PM (CST) via Google Meet
• Link: https://meet.google.com/jgm-qfgc-ikq
• Join by phone: Phone: 724-755-3071, PIN: 473381356

PFAB Meeting – Monday, 3-9-26 at 5:30 PM (CST) via Zoom
• Link: https://uchicago.zoom.us/j/96757139714?pwd=TTBDREQyUW9KeXYzRnd0REo5eThUdz09
• Meeting ID: 967 5713 9714
• Passcode: abc12345

We hope to see you there!

12/15/2025

Final reminder: PFAB Meeting TONIGHT at 5:30 PM via Zoom (see below)!

Hi Everyone! 🙂

Our next University of Chicago CF Care Center - Patient & Family Advisory Board (PFAB) Meeting will be next Monday, December 15 at 5:30 PM (CST) via Zoom. Here are the Zoom login instructions:

1. Download the free Zoom app onto your computer or phone.
2. Click “Join meeting” – and type the following Meeting ID and Passcode into the app:
-Meeting ID: 967 5713 9714
-Passcode: abc12345
OR click this link: https://uchicago.zoom.us/j/96757139714?pwd=TTBDREQyUW9KeXYzRnd0REo5eThUdz09

This meeting will be dedicated to introducing some of our newer CF care team members and sharing some ideas from the North American CF Conference (NACFC) this past October. Please mark your calendars and try to attend!

12/15/2025

Reminder: PFAB Meeting TONIGHT at 5:30 PM via Zoom (see below)!

Hi Everyone! 🙂

Our next University of Chicago CF Care Center - Patient & Family Advisory Board (PFAB) Meeting will be next Monday, December 15 at 5:30 PM (CST) via Zoom. Here are the Zoom login instructions:

1. Download the free Zoom app onto your computer or phone.
2. Click “Join meeting” – and type the following Meeting ID and Passcode into the app:
-Meeting ID: 967 5713 9714
-Passcode: abc12345
OR click this link: https://uchicago.zoom.us/j/96757139714?pwd=TTBDREQyUW9KeXYzRnd0REo5eThUdz09

This meeting will be dedicated to introducing some of our newer CF care team members and sharing some ideas from the North American CF Conference (NACFC) this past October. Please mark your calendars and try to attend!