Cystic Fibrosis ACT

16/10/2026

💙 Standing with Nathan Charles 💙

Our hearts are with Nathan Charles and his family following his recent diagnosis of Motor Neurone Disease (MND).

For so many of us in the cystic fibrosis community, Nathan has been far more than an advocate. He has been a friend, a source of hope and a shining example of what it looks like to live boldly with CF. With such generosity and courage, he has shared his story, lifted others up and reminded us all that we are never defined by our challenges. Our community is stronger, braver and more connected because of him.

Nathan, you have always been there for us. Now it is our turn to wrap our arms around you. We are holding you, and everyone who loves you, close in our thoughts. Please know that the community you have given so much to is right here beside you, every step of the way. 💙

We warmly invite our CF family, friends and supporters to rally around Nathan and, if you are able, to contribute to his GoFundMe to help support him and his loved ones. Every gift, big or small, is a way of saying "we love you, Nathan, and we've got you."

💙 Support Nathan here: https://www.gofundme.com/f/nathan-charles-mnd

Nathan, you have walked beside our CF community for so long. Now we walk beside you. You are loved, and you are never alone.

With all our love,

The Management Committee, Cystic Fibrosis ACT 💙

09/03/2025

We’re excited to announce that Cystic Fibrosis ACT is now proudly managed by Cystic Fibrosis Queensland. Rest assured, all the vital supports and services you rely on will continue seamlessly, ensuring people living with cystic fibrosis who attend a clinic in the ACT can access the care they need, when they need it.

Whether you’re looking for advocacy, community peer support connections, specialised education resources or life-giving airway clearance and breathing equipment, Cystic Fibrosis Queensland remains dedicated to your wellbeing. To learn more about our programs and fundraising, and to connect with us directly to see how we can support you on your journey speak with our Services team via [email protected]

To read more about this transfer, view: https://mailchi.mp/44560b19d44f/cfacttocfqld

26/02/2025

Stay Active, Stay Strong with Cystic Fibrosis ACT!

Regular physical activity is key to managing cystic fibrosis, improving lung function, and enhancing overall well-being. At Cystic Fibrosis ACT, we understand that staying active can come with financial challenges, which is why we offer financial assistance to support our members in leading an active lifestyle.

Whether it's a gym membership, exercise equipment, or sports gear, we're here to help you access the resources you need to keep moving, stay healthy, and feel empowered in your CF journey.

Whatever staying active looks like for you, we’re committed to making it more accessible.

Find out how we can support you: https://www.cysticfibrosis.org.au/cystic-fibrosis-act/

26/02/2025

Dine Out & Make a Difference!

Enjoy a great meal while supporting a meaningful cause! Through the Community Rewards Program by Canberra Southern Cross Club, you can nominate Cystic Fibrosis ACT as your chosen recipient.

Since 2015, this program has helped local organizations like CF ACT provide vital support to individuals and families living with cystic fibrosis. Your choice makes a real impact!

✨ Eat well, give back, and support your community.

Nominate today: https://www.cscc.com.au/rewards/

19/02/2025

Only 1 month left to help us reach our fundraising goal! There’s still plenty of time to make a difference, but we need your support now more than ever.

Donate today and help us build a stronger, healthier community.

For more details: https://canberraday.org.au/o/cystic-fibrosis-act

19/02/2025

Take Action for Our CF Community!

Help us advocate for better support and care for people living with Cystic Fibrosis and related conditions like CF-related diabetes by signing this e-petition. This is a direct request to the government, urging them to take action on this important issue.

Every signature counts in making a difference! Click the link, sign today, and help us drive change. Thank you for your support!

Equitable Access to the NDSS for People Living with CFRD

Cystic fibrosis-related diabetes (CFRD) requires lifelong, consistent management -yet access to essential support through the National Diabetes Services Scheme (NDSS) ends at age 21.

This age-based restriction imposes unnecessary financial and logistical burdens on adults with CFRD, hindering their ability to manage their condition and increasing the risk of serious health complications.

We urge policymakers to extend NDSS support beyond age 21, ensuring equitable, lifelong access to vital diabetes care for all people living with CFRD.

🔗 Sign the petition: https://www.aph.gov.au/e-petitions/petition/EN7148

18/02/2025

🧪 New Research Highlights the Link Between Sweat Chloride & CF Treatment Outcomes

A recent study published in the Journal of Cystic Fibrosis found that people with CF who achieved lower sweat chloride levels after CFTR modulator treatment experienced better clinical outcomes — including improved lung function, nutritional status, and fewer respiratory symptoms.

Key findings:
- Lower sweat chloride levels correlated with better CFTR function.
- Patients with levels below 60 mmol/L saw greater improvements.
- All treated patients showed benefits compared to placebo, regardless of sweat chloride levels.

These findings underscore the importance of restoring CFTR function as early as possible to optimize long-term health outcomes.

🔗 Read more here: https://cysticfibrosisnewstoday.com/news/cftr-modulators-need-lower-sweat-chloride-levels-study/

09/02/2025

🌟 Making a Difference This Canberra Day! 🌟

This year, we're teaming up with Hands Across Canberra to support those who need it most. Every dollar donated goes toward providing essential services, care, and hope in our community.

Together, we can create a stronger, more connected Canberra - because giving where we live matters.

Join us in making an impact. Every contribution counts!

For more details: https://canberraday.org.au/o/cystic-fibrosis-act

Together, we can create a lasting impact in the lead-up to Canberra Day.

05/02/2025

🍽️ Searching for your next dining spot in Canberra?

Discover delicious meals at the Canberra Southern Cross Club and make a meaningful difference in the process!

Since 2015, their Community Rewards Program has empowered diners to support local causes they care about. By nominating Cystic Fibrosis ACT as your chosen beneficiary, you’ll help provide crucial assistance to individuals and families impacted by in our community ❤️

It’s more than just a meal - it’s a chance to create positive change while enjoying great food.

Ready to dine with purpose? Learn more and nominate today: https://www.cscc.com.au/rewards/

04/02/2025

As part of this year’s Canberra Day Appeal, we’re joining forces with Hands Across Canberra to raise vital funds for our charity that makes a real difference in our community.

Every dollar donated helps provide essential services, support, and hope to those in need. Together, we can make Canberra a stronger, more connected place for everyone.

We’re committed to giving where we live, and we invite you to join us in this meaningful cause. Every contribution counts!

Donate today and help us build a stronger, healthier community.

For more details: https://canberraday.org.au/o/cystic-fibrosis-act