Cystic Fibrosis Queensland

Thank you to Kate Edwards for once again hosting her bi-annual fundraising dinner in support of the cystic fibrosis community.

Held in May, this wonderful event brought people together for a great night of connection, generosity and community spirit, raising an incredible $4,718.57 to support people living with cystic fibrosis and their families.

We are so grateful for Kate's ongoing commitment and dedication to making a difference. And thank you to everyone who attended and contributed to the success of the evening. Your support truly makes a difference.

Do you remember Mega Man?

The author of Mega Man, Dominique Gardiner, is hoping to track down a copy of her book about cystic fibrosis.

If you have a copy, or know someone who might, we'd love to hear from you. Please email us at [email protected].

We'd appreciate any leads from our community!

For many families living with cystic fibrosis, treatments and medications become part of everyday life. This story reflects on how routines and rituals helped one family manage a demanding treatment schedule while still making space for childhood, laughter and special moments.

Read the full story: https://cysticfibrosisnewstoday.com/columns/rituals-routines-helped-abide-strict-treatment-regimen/

Rituals and routines helped us abide by a strict CF treatment regimen Columnist Ed Jordan shares how rituals and routines helped his late daughter, Jasmine, be able to sometimes just be a kid.

Creon® Supply Update

Viatris has provided an update regarding ongoing Creon® supply constraints, with availability expected to vary between pharmacies until January 2027.

Please read the attached letter for important information and guidance for patients who rely on Creon®. https://acrobat.adobe.com/id/urn:aaid:sc:AP:fb92f7c1-e485-4c5e-ac9e-2b0eaaaec464

New Cystic Fibrosis visors have arrived

Stay cool, comfortable and show your support for the cystic fibrosis community with our new visors.

-Lightweight mesh design
-Crisp white colour
-Perfect for walks, sports, fundraising events and everyday wear
-Just $15 each

Whether you're taking part in a community event, heading out for a morning walk, or cheering on , these visors are a great way to raise awareness while staying sun-safe.

Available now for $15. Limited stock available.

https://www.cfqld.org.au/shop-home/

Join us for a fun morning of showing, telling and talking with other young members of the cystic fibrosis community.

When: Sunday, 5 July 2026

Time: 9:00am

Where: Microsoft Teams

This special CF Social is designed for children aged 6 years and under. Bring along your favourite toy, book, drawing, pet, or anything else you'd like to share with the group.

Our CF Socials are a wonderful opportunity for little ones to connect with others in the cystic fibrosis community, make friends, and have fun in a safe and supportive environment.

To register your interest, please email Kim at [email protected].

We can't wait to see you and your favourite toy there!

National Press Club Address

Andrew Leigh MP - Assistant Minister for Productivity, Competition, Charities and Treasury

Andrew Leigh's National Press Club address rightly recognised the critical role charities play in building trust, strengthening communities, and improving social connection. For organisations like Cystic Fibrosis Queensland, Cystic Fibrosis NT and Cystic Fibrosis ACT, this recognition is important. Everyday charities step in to provide support, advocacy, and services that many Australians rely on.

What was missing from the conversation, however, was the growing financial pressure facing the charity sector. While trust and social cohesion matter, charities also need sustainable funding, supportive policy settings, and recognition of the essential role they play in delivering outcomes that government alone cannot achieve.

For people living with cystic fibrosis, charities are not an optional extra. They are often the difference between navigating a complex health system alone and having a community standing beside you. https://iview.abc.net.au/video/NC2611C020S00

New research has found that long-term treatment with Trikafta may help create a healthier balance of bacteria in the lungs of adults with cystic fibrosis.

The study showed that people taking Trikafta for two to three years had more diverse lung bacteria and lower levels of harmful bacteria commonly linked to respiratory infections. While the lung microbiome did not fully return to levels seen in people without CF, researchers found it moved in a positive direction over time.

The findings add to our growing understanding of how CFTR modulators like Trikafta may improve health beyond lung function alone.

You can read more about the study here: https://shorturl.at/mKtdv

Even better? It's completely free for our members.

That includes your family members, friends, carers and colleagues — because mental health support is something that benefits our whole community.

We understand that living with, or caring for someone with, a genetic condition can bring unique mental health challenges. That's why it's so important that the people around us know how to recognise the signs of a mental health crisis and respond with confidence and care.

Our upcoming course will be held at Caloundra RSL on 23–24 July and places are filling fast.

Join us to gain practical skills, build confidence and learn how to support yourself and your loved ones when it matters most.

Register now: https://www.cfqld.org.au/mental-health-first-aid-mhfa-training-registration-form/

Caloundra RSL
23–24 July (9am-4pm)
Free for members

Where would you like to see us deliver this training next?

This World Continence Week, we're raising awareness of an often overlooked aspect of living with cystic fibrosis. Incontinence is the involuntary loss of bladder and bowel control.

For many people with cystic fibrosis, persistent coughing, chronic constipation and increased pressure on the abdomen can place significant strain on the pelvic floor muscles. Over time, this can contribute to continence issues, affecting people of all ages and genders.

While continence issues can be difficult to talk about, they are common within the cystic fibrosis community and nothing to be embarrassed about. Left unaddressed, they can impact physical activity, treatment adherence, confidence, social participation and overall quality of life.

This World Continence Week, let's help break the stigma, encourage open conversations and remind our community that support is available. If you're experiencing continence concerns, speak with your cystic fibrosis care team to explore the support options available to you or call the National Continence Helpline at 1800 33 00 66.