65 Km's for Cystic Fibrosis

31/01/2026

This is the best news ❤️❤️❤️ So many CF sufferers who were not eligible (it would not benefit them) for the previous Vertex life saving/life changing medication can take this one. This really is the best news ever ❤️

We’re proud to share a major milestone for Australians living with cystic fibrosis.

From 1 February 2026, Alyftrek will be listed on the PBS, making this next-generation treatment more accessible to eligible Australians aged six and over.

Alyftrek combines three active ingredients - vanzacaftor, tezacaftor and deutivacaftor - to target the genetic cause of CF. As the first once-daily CFTR modulator, it helps control mucus production, supports lung and digestive health, and may make daily treatment routines easier to manage.

This achievement belongs to our entire community.

Thank you to the individuals, families, federation members and supporters who advocated alongside Cystic Fibrosis Australia, sharing your stories and insights to highlight why access to treatments like this truly matters.

Together, you made this possible, and we’ll continue working to ensure everyone living with CF can access the treatments they need to live full and productive lives.

24/06/2025

Incredible news ❤️

🌹Access Achieved🌹

Trikafta will officially be expanded on the PBS from 1st July, giving hundreds more Australians living with cystic fibrosis access to this life-changing therapy, including those with rare and ultra-rare mutations who have never had access to a modulator before.

This expansion includes:
* Approximately 250 more people eligible for Trikafta
* Approximately 45 people gaining access to a CF modulator therapy for the first time
* Inclusion of 271 additional mutations
* A new option for Australians living with CF aged 2+

“What once felt out of reach is now within our grasp.” Dr. Jo Armstrong, CEO, Cystic Fibrosis Australia

This progress is only possible because of the tireless advocacy of our community and the government’s willingness to take a pragmatic, compassionate approach to access.

But we’re not done. Not until every person with CF, including those with Class I mutations, has access to the treatment they need and deserve.

Together, we are rewriting the future of cystic fibrosis in Australia.

Read the full communique here: https://bit.ly/40kfi7D

Join us LIVE on the CFA page from 9am (AEST) today, as the Federal Health Minister, The Hon Mark Butler MP delivers this exciting announcement.

01/05/2025

Today marks the start of Cystic Fibrosis Awareness Month 🌹

Advances in life saving medications & therapies have come so far over the last 5 + years & have changed and saved the lives of many Cystic Fibrosis sufferers who have access and are able to tolerate them. It is not a cure, and they still face many challenges.

Ben here puts it into perspective ❤️

28/01/2025

Sophie Pierce will become the first person in history with the life-threatening condition to complete the journey 💪

04/01/2025

Exciting advancements in CF care are happening in the U.S. with the FDA approval of ALYFTREK, a once-daily CFTR modulator for those 6 years and older, including patients with 31 rare CFTR mutations. This innovative therapy offers a new option for many who have never had access to modulators before.

At Cystic Fibrosis Australia, we are committed to ensuring similar progress here in Australia. Access to the best treatments and therapies should not depend on where you live. We will continue to advocate tirelessly so that every Australian with CF can benefit from these advancements as soon as possible.

Together, we can create a future where all people with CF have access to the care they deserve.

To read further: https://news.vrtx.com/news-releases/news-release-details/vertex-announces-us-fda-approval-alyftrektm-once-daily-next

28/10/2024

Physio idea for the little ones ……

15/10/2024

Nathan’s story is truly inspiring ❤️Make it if you can 🙌🏻

Join Us for the Nathan Charles Lunch: A Story of Triumph

Hear from Nathan Charles, the only person with cystic fibrosis to achieve elite status in professional contact sports. His journey of resilience and mental toughness is nothing short of inspiring.

Join us for an unforgettable lunch as Nathan shares his powerful story of overcoming adversity and succeeding against the odds.

📅 Thursday, 21st November
📍 2 Market St, Sydney

Tickets include a three-course meal with premium drinks. Don’t miss this chance to connect and be inspired!

Get your tickets here: https://shorturl.at/00AFA