Living with Cystic Fibrosis

11/21/2025

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

https://www.facebook.com/share/16mvzURetA/

11/21/2025

11/21/2025

11/14/2025

CF-related diabetes: https://bit.ly/48kf0RJ

World Diabetes Day reminds us that diabetes looks different for everyone. For people with cystic fibrosis, CF-related diabetes adds another layer to an already demanding routine. Food choices, medications, glucose checks, and the mental load of it all can feel like a lot.
If CFRD is part of your life too, know that your daily effort matters.

11/12/2025

Feel like you don’t have any affordable insurance options? You’re not alone — nearly 40% of the cystic fibrosis community has difficulty paying for their insurance.

But you don’t have to figure it out on your own. Compass case managers can walk you through your choices and help you understand which plan best fits you or your child’s needs.

Get free, one-on-one support: https://on.cff.org/47P52Hp

11/11/2025

🔵 CF Circles: CF-Related Diabetes 🔵

Looking to connect with others who understand navigating life while managing pre-diabetes or cystic fibrosis-related diabetes? Join a CF Circles virtual small-group discussion Nov. 11 at 7 p.m. ET.

CF Circles are a supportive space to share, support each other, and find validation from people who understand what you’re going through. This session is open to adults with CF ages 18 and older and their caregivers.

Register today: https://cff.zoom.us/meeting/register/Y-86MLNJT4S_NRFvSXF0GA #/registration

11/01/2025

Trikafta gave Bishop Saunders new hope for the future, but he struggled to escape the scarcity mindset that had shaped his life for more than 25 years. By being honest with himself and others, and striving to balance informed financial decisions with moments that spark joy, Bishop is learning how to plan for a brighter future.

10/30/2025

For too long CF patients, many of whom are children, have been dying needless, painful deaths because of Vertex’s exorbitant pricing and aggressive use of patents. But finally the monopoly is over - and truly affordable treatment is here! Now, we need to make sure Vertex doesn't get in the way of ...

10/29/2025

We are deeply saddened to share that Doris Tulcin, co-founder of the Cystic Fibrosis Foundation and an advocate for people with CF, has passed away.

When her daughter, Ann, was born in 1953 and diagnosed with CF, she was given less than a year to live. Doris flatly rejected that outcome. Instead, she galvanized a group of parents to form the Foundation.

Doris had a gift for rallying others to the cause — turning hesitant donors into major givers. In 1982, she launched a campaign that generated $28 million to support research programs that helped pave the way to the discovery of the CF gene.

She served in key roles throughout her career, including national president of the CF Foundation, chapter board chair and executive director of the Greater New York Chapter, and three terms as the National Board of Trustees Chair.

Always emphasizing hope and urgency, Doris reminded others that while progress had been made for many, everyone with CF should benefit from breakthroughs.

10/28/2025

Health insurance can feel confusing — the terms, the plan options, the fine print. Our Insurance Basics guide breaks down the terminology you need to know and outlines the different types of coverage so you can understand your choices.

Whether you’re enrolling for the first time or exploring your options, we've linked a guide in the comments that is a helpful starting point.

10/23/2025

See the unseen side: https://bit.ly/4or9DpW

Not all symptoms of cystic fibrosis are visible.
Behind the coughing and hospital stays are unseen challenges like chronic pain, fatigue, digestive issues, and anxiety - daily battles that often go unnoticed.

💙 A little understanding goes a long way.