University of Chicago CF Center Patient & Family Advisory Board

06/10/2026

06/08/2026

Hi Everyone 👋

This is to announce that our PFAB meeting, which was previously scheduled for tonight (Monday, 6-8-26) at 5:30 PM, will be pushed to another Monday evening this month. We will keep you posted on the upcoming date/time of the meeting.

06/03/2026

Hi Everyone 👋🙂

Here is an upcoming opportunity that may be valuable for people with CF (18+), parents, and caregivers:

CF Circle: The Black CF Experience: Adults, Parents, and Caregivers
Join this peer-led CF Circle focused on the Black CF experience on Tuesday, June 23 from 6 PM to 7:15 PM (CST). The virtual small-group discussion will offer an opportunity for Black adults with CF, as well as parents and caregivers of Black individuals with CF, to connect with peers around a shared experience. There is no formal agenda for CF Circles, but discussion topics may include misdiagnosis or delays in treatment, self-advocacy in medical settings, and practical strategies to manage life with CF. To register for this event, learn more, and sign up for emails about future CF Circles, visit www.cff.org/cfcircles. Here is the direct link to sign-up for this event: https://cff.zoom.us/meeting/register/ACukPpUZQDScLMt2kDzkrQ #/registration

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.