Living with Cystic Fibrosis

03/07/2026

Brought to you by my 26 year old son with CF. 💜

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03/07/2026

Read how anxiety management helps with cystic fibrosis: https://bit.ly/4mmyASK

03/07/2026

There is still time to register for next week’s CF Circle on mental health. Join other adults with cystic fibrosis and caregivers of people with CF March 10 at 7 p.m. ET to discuss the impact of cystic fibrosis on your mental health. Connect with people who have walked in your shoes on topics like depression, anxiety, grief and loss, medical trauma, and other mental health challenges.

03/07/2026

🕺 Lights up. Community on. Welcome to Studio 65. The CFRI CF Adult Retreat is a space created by and for adults with CF to share experiences, learn together, and build lasting connections.

With engaging sessions, support groups, creative activities, wellness moments, and a disco-inspired celebration, this spring retreat is all about showing up exactly as you are.

📅 Monday April 6th – Friday April 10th, 2026
📍 El Retiro Center Los Altos, CA & Virtually

🪩 A quick reminder for those planning to attend in person:

To support safe participation, please complete a culture (sputum/sinus/throat) between 2/27 – 3/24/26, to get final reports by April 3.

✈️ Travel & accommodation scholarships are available — cost should never prevent someone with CF from attending.

Prefer to join from home? The retreat will also be fully accessible virtually.

🔗 Learn more & register: https://www.cfri.org/education-support/cf-adult-retreat/

Sponsored to date by Vertex Pharmaceuticals, Devin Wakefield & family bequests.

03/07/2026

Joining a clinical trial takes time and effort, but your participation makes a difference for everyone with cystic fibrosis. Thanks to clinical trial volunteers, we’ve achieved incredible breakthroughs in CF treatment.

Use the CF Clinical Trial Finder to explore enrolling clinical trials today.

03/07/2026

🌱 New season, steady support. As spring begins, CFRI’s online Support Groups continue to offer a place to connect, listen, and be heard. Facilitated by social workers and CF community members, these groups meet monthly and are open worldwide.

Growth doesn’t have to happen alone. Register Today: https://www.cfri.org/education-support/psychosocial-support-programs/

CFRI support groups are made possible in 2026 to date by Viatris, Genentech, individual donors and bequests.

03/07/2026

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💛💙🩷💜This month, on Breathe their Name Day, Wednesday, 18th March 2026, we pause to honour and remember the lives of those in our CF community who are no longer with us. Cystic fibrosis can take so much, but it can never take away the love we carry, the memories we hold, or the stories we continue to tell.⁠💛💙🩷💜
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We have been deeply moved by the beautiful tributes offered by our community, each one carrying love, courage, and cherished memories. These heartfelt messages will be proudly displayed on our Tribute Wall and across socials on Breathe Their Name Day.⁠
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💛If you would like to submit a tribute, please visit https://www.cftogether.org.au/submit-a-tribute

We understand this time may bring many emotions. If you need support, our team is here for you. Please call 1300 CF HELP (23 4357) or email support@cftogether.org.au⁠ for confidential support.

02/04/2026

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The morgue beneath Babies Hospital reeked of death and cheap ci******es. It was 1935, and Dr. Dorothy Andersen had just lit her fourth Lucky Strike of the morning.

On the steel table before her lay a child who had eaten everything offered but starved anyway. The death certificate blamed celiac disease. Dorothy suspected the certificate was a lie.

She'd been barred from surgery for one reason: her anatomy was wrong. Not her hands, which were steady. Not her mind, which was brilliant. Her crime was being born female. So the hospital administrators smiled politely and sent her to the basement where women belonged, surrounded by corpses that couldn't complain about her gender.

Fine. If they wanted her studying the dead, she'd study them better than anyone alive.

The scalpel moved with precision. What she found inside that small body made her pause. The pancreas looked like it had been chewed up and spat out, riddled with cysts, turned to scar tissue. The digestive enzymes that should have broken down food never made it past the blocked ducts.

This child had eaten herself to death on an empty stomach.

Dorothy pulled files on 49 similar cases. Night after night in the archives, chain-smoking through patient records, she found the pattern. Destroyed pancreas. Lungs thick with mucus. Bodies that consumed everything and absorbed nothing.

Every single doctor had written the same lazy diagnosis: celiac disease. Every single doctor had been catastrophically wrong.

She named it Cystic Fibrosis of the Pancreas and built the tests to catch it in living children. When a heat wave hit in 1948, a pediatrician working with her research discovered CF patients were sweating out dangerous amounts of salt, leading to the sweat test still used today.

Dorothy Andersen wore hiking boots to the hospital. Built her own furniture. Threw parties in the lab and refused to apologize for existing loudly in spaces designed to exclude her.

They tried to bury her in a basement. She saved thousands of children from there instead.

That's not defeat. That's defiance with a body count of lives saved.

02/04/2026

Did you catch this recent clue on Jeopardy? 👀

While we've made important progress over the years, resulting in more adults living with cystic fibrosis than ever before, there is still no cure for CF. We continue to work every day to fund research to develop new treatments, advance high-quality, specialized care, support the CF community, and move us closer to a cure.

01/21/2026

SUPPORT FOR THE SOAR ACT. The SOAR Act (Supplemental Oxygen Access Reform Act) was discussed by the House Energy & Commerce Health Subcommittee and remains active. CFRI joined multiple respiratory health patient advocacy organizations in co-signing a letter to committee members, seeking support for this bipartisan, vitally needed legislation.

Currently members of our community dependent upon supplemental oxygen who receive their medical care through Medicare (including many people under the age of 65) have extremely limited access to portable oxygen, impacting health and quality of life.

01/21/2026