Cystic Fibrosis Goldfields

30/07/2024

🚨 Big Announcement! 🚨

Cystic Fibrosis Australia, your Peak National Body, is thrilled to share that Trikafta will now be available on the Pharmaceutical Benefits Scheme (PBS) for children aged 2+ with at least one F508del mutation, starting Thursday 1st August 2024. This expansion will benefit approximately 290 children, including 100 children gaining access to a modulator for the first time. 🎉

Your voices have been heard, and your advocacy has made a significant impact. We extend our heartfelt thanks to everyone who wrote submissions to the Pharmaceutical Benefits Advisory Committee (PBAC) and shared their stories. This milestone wouldn’t be possible without you.

Heath, a 4-year-old living with CF, and his family have been waiting for this moment. Now, he will have access to Trikafta before he starts school, thanks to our collective efforts. His story, like many others, underscores the importance of our ongoing advocacy.

Special thanks to our Federation Members, the Health Department, Vertex Pharmaceuticals, and everyone involved in making this expansion possible. Together, we are driving real change and transforming lives.

👉 Click the link to read the full communique from our CEO, Jo Armstrong: https://mailchi.mp/cfa.org.au/your-voice-matters-6412249

Mark Butler MP

19/03/2024

It’s Neurodiversity Celebration Week, and statistically ADHD, a common neurodivergence, is more common in people with CF than the general population.

Here’s Breanna’s story about how her ADHD diagnosis helped her manage her CF.

I recently was diagnosed with a type of attention deficit hyperactivity disorder, which helps explain why I sometimes didn’t keep up with daily care. By taking ADHD into account, I’m managing my cystic fibrosis better.

01/11/2023

To have Cystic Fibrosis, you must inherit two copies of the CFTR gene that contain mutations, one copy from each parent. That means that each parent must either have CF or be a carrier of the CFTR gene mutation.

To learn more, head to our website: https://www.cysticfibrosis.org.au/causes/

14/04/2023

Five years ago we, Peggy and Jenn, embarked on a fabulous adventure. We’ve always meant to fix the awful title of the article (graphic design is my passion 🥴).

One day we’ll do another amazing feat of physical endurance to raise money and awareness for CF legends in the Goldfields, Western Australia, and the whole country. But for now, follow us on Facebook in May for what CF is, what it isn’t, and what it means to people in your community.

05/01/2023

Did you get a chance to pop down and see them over the school holidays?

16/12/2022

Stepping in the right direction!!
An early Xmas present!!

Cystic Fibrosis Australia shared a post on Instagram: "A quick update from our CEO Jo Armstrong on todays announcement 🌹". Follow their account to see 526 posts.

30/09/2022

Are you ready for Telethon Weekend!??!

2022 Telethon weekend is coming up fast on Saturday 22nd and Sunday 23rd of October! Tickets for the live shows ARE ON SALE NOW!

The Telethon Family Festival will also be held on the Sunday and the CFWA team look forward to seeing many familiar faces there!

Ava (pictured) who has CF, is one of 4 children featuring on this year's Coles donation collectable cards. Her design draws on her experience living with CF and proceed go directly to Telethon- Great work Ava!!

Our friends at Coles have launched their Telethon fundraising appeal with four collectable donation cards sold in store. Four Western Australian children feature on this year’s $2 and $5 donation cards with each design drawing on their own experience with a medical condition to raise funds for oth...