Johns Hopkins Cystic Fibrosis Center

04/23/2025

At this year’s ResearchCon, learn about the most pressing topics in the CF community from those who understand it best - experts in the field and those with lived CF experiences.

ResearchCon is an opportunity for everyone to learn about and discuss CF-related science and care. Regardless of your connection to CF, you can explore your curiosity and engage with experts and peers, while deepening your understanding alongside those living with and studying the disease. This virtual event provides a space to ask questions and participate in discussions that equip you with knowledge to better advocate for yourself, your loved one, or your patients.

Register here: https://events.ringcentral.com/events/researchcon-2025-2779dba6-b19c-4474-aff9-950948dc7a8d/registration?utm_campaign=rc25&utm_medium=web&utm_source=cff-org-page

04/08/2025

Take a look at this scholarship opportunity from AbbVie! Reach out to your clinic social worker with any questions.

We are happy to share AbbVie's CF Scholarship is kicking off next week! For the past 30 years, AbbVie has been awarding graduate and undergraduate students that are living with CF and are so excited to see this initiative kick off!

⏰️ Applications open Thursday, April 3rd at 11am CST and close Thursday, May 15th.

➡️ More information:
https://www.abbviecfcommitment.com/cfscholarship

03/31/2025

Take a look at these wonderful scholarship opportunities!

🎓 BEF SCHOLARSHIPS—APPLY NOW! 💙

📅 Deadline: Friday, April 18, 2025

The Boomer Esiason Foundation is committed to supporting the CF community in their academic journey. Check out these two incredible scholarship opportunities:

🏆 Boomer Esiason Foundation Academic Scholarship
📚 Open to students with cystic fibrosis who demonstrate academic excellence, leadership, and community service.

🏆 Paul Drury Memorial Scholarship
💙 Honoring CF family members—siblings and children who support loved ones battling cystic fibrosis.

Don't miss this chance to ease the financial burden and focus on your future!

03/27/2025

Our Annual CF Patient and Family Day is still open for registration!

In Person registration: https://jhmi.co1.qualtrics.com/jfe/form/SV_8GNHOaFuPPYhQ4m

Virtual Registration:
https://cff.zoom.us/webinar/register/WN_qNzx958HQKS4Ksz9KLd28Q

It's not too late to register for our annual CF Patient and Family Day!!

Please join us for our annual Patient and Family Day featuring Mary Frey, creator of The Frey Life. Mary is an adult living with CF who vlogs about her life with CF ().

The event will take place on Saturday, March 29th, 9-11 am (breakfast at 8:30am) in the Chevy Chase Conference Center located on the Main Level of the Johns Hopkins Hospital.

Following the talk Mary will be part of a Wellness Panel Discussion with
Thomas Skeeter – Adult & Pediatric CF Mental Health Coordinator
Morgan Bifano – Sleep and Pediatric Clinical Psychologist
Myra Giaffoglione – Co-founder of CF Yogi

In Person registration: https://jhmi.co1.qualtrics.com/jfe/form/SV_8GNHOaFuPPYhQ4m

Virtual Registration: https://cff.zoom.us/webinar/register/WN_qNzx958HQKS4Ksz9KLd28Q #/registration

03/27/2025

Interested in a purple “Let's end CF” T-shirt, free for all people with cystic fibrosis? Reach out to Melissa Deokaran at the Maryland chapter, mdeokaran@cff.org.

Show your commitment to a cure with our purple “Let's end CF” T-shirt, free for all people with cystic fibrosis! This year’s design is worn by Alexis, an adult with CF.

If you haven’t received yours yet, contact your local chapter to receive your free T-shirt, and learn more about participating in events in your community.

03/24/2025

It's not too late to register for our annual CF Patient and Family Day!!

Please join us for our annual Patient and Family Day featuring Mary Frey, creator of The Frey Life. Mary is an adult living with CF who vlogs about her life with CF ().

The event will take place on Saturday, March 29th, 9-11 am (breakfast at 8:30am) in the Chevy Chase Conference Center located on the Main Level of the Johns Hopkins Hospital.

Following the talk Mary will be part of a Wellness Panel Discussion with
Thomas Skeeter – Adult & Pediatric CF Mental Health Coordinator
Morgan Bifano – Sleep and Pediatric Clinical Psychologist
Myra Giaffoglione – Co-founder of CF Yogi

In Person registration: https://jhmi.co1.qualtrics.com/jfe/form/SV_8GNHOaFuPPYhQ4m

Virtual Registration: https://cff.zoom.us/webinar/register/WN_qNzx958HQKS4Ksz9KLd28Q #/registration

03/20/2025

Check out the latest edition of eCystic Fibrosis Review on Cystic Fibrosis Life Transitions.

Until the advent of highly effective CFTR modulator medications, cystic fibrosis was considered a pediatric disease, because most individuals did not survive into adulthood. Now, with more adults living with CF than children, treatment priorities must change. Clinicians need to increase their unders...

03/19/2025

Happy Social Work month to Megan and Becca, our favorite social workers!
We appreciate all that you do for clinic 😊

03/13/2025

Join us in celebrating National Nutrition Month 🥕🥑🍎

Amanda, Izzy, Marsha, and Lisa, you are amazing and so appreciated!!

03/06/2025

Please join us for our annual Patient and Family Day featuring Mary Frey, creator of The Frey Life. Mary is an adult living with CF who vlogs about her life with CF ().

The event will take place on Saturday, March 29th, 9-11 am (breakfast at 8:30am) in the Chevy Chase Conference Center located on the Main Level of the Johns Hopkins Hospital.

Following the talk Mary will be part of a Wellness Panel Discussion with
Thomas Skeeter – Adult & Pediatric CF Mental Health Coordinator
Morgan Bifano – Sleep and Pediatric Clinical Psychologist
Myra Giaffoglione – Co-founder of CF Yogi

In Person registration: https://nam02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fjhmi.co1.qualtrics.com%2Fjfe%2Fform%2FSV_8GNHOaFuPPYhQ4m&data=05%7C02%7Crradins1%40jh.edu%7C5e4c156aae4247a5743608dd5b4dbd69%7C9fa4f438b1e6473b803f86f8aedf0dec%7C0%7C0%7C638767111702131441%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=4ROcYpSfWKBKpmE1iiqfH17QdX1dnYR08yWcQKkfQRk%3D&reserved=0

Virtual Registration: https://cff.zoom.us/webinar/register/WN_qNzx958HQKS4Ksz9KLd28Q

02/21/2025

We had a surprise visitor in clinic last week…always a treat when Dr. Rosenstein stops by 😊

02/19/2025

Check out the Cystic Fibrosis Foundation’s website at cff.org! Link can also be found in our bio

02/07/2025

Save the date for our annual family day event! This year we will feature Mary Frey, an adult living with CF who vlogs about daily life with CF. Check out her vlog at https://www.youtube.com/

Link can also be found in our bio!

02/06/2025

02/04/2025

The Johns Hopkins team will be walking to raise money to cure CF at the Great Strides Walk on May 15th. Please join our team or make a donation at fundraise.cff.org/BaltimoreGS2025/jhh

02/04/2025

Join the Johns Hopkins Cystic Fibrosis Center team at the Cystic Fibrosis Foundation - Maryland Chapter Annual Meeting. We will reflect on milestones reached in 2024 and what to look forward to in 2025. Please RSVP by Monday, February 10th.
https://engage.cff.org/annualmeetingmdchapter

01/21/2025

It’s not too late to get a flu shot!

The Maryland State Health Department reports that overall respiratory illness activity in Maryland is HIGH right now.

Why should my family get an annual flu shot?

1. The flu shot can reduce the risk of getting the flu by helping the body fight off or increase its immunity to the flu virus.

2. When more people receive the flu shot, there is a better chance of reducing its spread.

3. Protecting yourself is a lot easier than treating the flu!

4. Flu can mean up to a week of feeling bad and missing work, school, or family events, or it can result in more serious illness.

01/14/2025

Today from 7PM-8PM ET, the Cystic Fibrosis foundation will be hosting a CF circle “Life Without CFTR Modulators.” This small group discussion is for adults with CF who are not eligible for or not benefiting from a CFTR modulator (Trikafta®, Symdeko®, Kalydeco® and Orkambi®) and offers a supportive environment to connect with others who share similar experiences. Join the conversation to connect with and find validation from others who understand what you are going through and your Life Without Modulators experiences.

Register at the link in our bio!