We’re listening: Project CF Strong

We need CF adult experts!

Are you full of great ideas on what CF Adults really need when they’re searching for information? Then CF Strong is the project for you!  We are seeking volunteers to form an Advisory Group to our project team. You’re the experts on all things CF, so we need adults with CF or their partners, to be the voice of the community.

We want to know what information will help make your lives easier. What’s unhelpful? What’s a top priority? Or have you ever looked up another organisation’s website and thought ‘I wish we had something like that?’ Well, this is your chance to influence the information and advice we provide.

What is CF Strong?

Life with CF changes when you become an adult. The modern facilities, the Starlight Room and Clown Doctors become a distant memory as adult life arrives. CF Strong aims to bring back some warmth to the big kids, and to strengthen the adult community by enabling shared knowledge, advice and support.

CF Strong is a one-stop shop for adults with CF. It will be an online information portal and interactive platform, designed and built for adults and their key networks (such as family, tertiary providers, employers and sporting clubs). We aim to provide a platform for all Australian adults to share and gain information on key life transitions, social, emotional and medical issues.

With our assistance, adults will be invited and encouraged to blog, film and podcast their own experiences. As a result, the project will primarily be driven by the needs and wants of CF adults, giving further control and clarity over decisions.

Who are we looking for?

We’re looking for four to six adults 18+ who have CF or a partner with CF, to join us to advise and help prioritise content and fill gaps. This will occur on a quarterly basis for an hour, via video conferencing, for the duration of the project, which is from March 2020 to January 2022.

When does it start?

The project has kicked off! The NDIS has kindly given our community a grant to start building, so we are keen to hear from you ASAP.

How can I get involved?

Contact our project team on projects@cfcc.org.au or call Tess on 03 9686 1811, and tell us a little bit about yourself:

  • Share a story about you’ve done to make your life easier that others may find helpful? (max 300 words)
  • What do you want to read about that isn’t being discussed? (max 200 words)
  • Tell us what information is a priority and what’s not? (max 200 words)

Applications close on Friday 20 March

Please include your name, state, a contact number and email. We can’t wait to hear from you!