Dialog Box

Chair & CEO End of Year Message

To all our members, donors, volunteers, partners, and community members who have been involved with CFCC this year.

Wow – what a year 2022 has been! The past two years of COVID-19 have meant some challenging times for us all. Despite this, since coming out of the pandemic this year, we have made some significant progress. This year, Cystic Fibrosis Community Care has continued to go from strength to strength and has achieved many incredible things in the last 12 months.

Some highlights have included returning to face-to-face events with our High Tea in Sydney, CF Month, Night C4F, and Great Strides in both Sydney and Melbourne (which engaged a record 1200 participants!). After two years of lockdowns and restrictions, it was a welcome change to finally be able to interact with our members and supporters again!

Back in April, we received the exciting news that Trikafta has been listed on the PBS for people aged 12+ with at least one Delta F508 mutation. Just two weeks ago, the Pharmaceutical Benefits Advisory Committee (PBAC) have recommended the approval of Trikafta for those aged 6 - 11 years with at least one F508del gene change, with Minister for Health and Aged Care Mark Butler also reassuring us that the Albanese Government will move quickly to make this available for our younger Australians.

It has been a privilege to be CEO of Cystic Fibrosis Community Care this past year and to meet so many of you. I am proud to share with you that during 2022 we provided over 1,259 grants and subsidies across NSW and Victoria that incorporated the cost of nebulisers and medication (including 10 first nebulisers for children under 6 years old), fitness-related reimbursement, education, social work support, over $35,000 in emergency financial assistance, and, of course, advocacy.

None of these things would be possible without your support, so thank you!

Looking forward to 2023, we have a lot of exciting things planned, and we can’t wait to get going. The needs of our community are adapting, and as such, it is our duty to ensure CFCC continues to offer relevant and evidence-based support services.  

In the new year, we will:
  • Develop our next strategic plan, which will consider what CF will look like in the next 10 – 15 years, and how we can deliver improved care and outcomes for all.
  • Consult with community members, families, carers, partners, and clinicians to ensure our strategy meets your needs.
  • Increase our advocacy work, ensuring that the Government follows through on their promise to deliver Trikafta for younger Australians with CF, and pushing for people with CF aged under 21 to be eligible for subsidised continuous glucose monitor sensors.
  • Continue to work to ensure important medications are available to all those who need it – something your efforts and voices will continue to play a big role in supporting!
  • Our Programs and Services team will continue to improve our existing programs and services across Victoria and New South Wales and bring our two communities closer together.
  • Partner with other CF organisations to bring our voices together to create one stronger voice that works to achieve the same outcome.
  • Our Fundraising and Marketing team will continue to develop how we raise funds, champion our messages, and engage the community to raise vital funds to support our important work.

As part of my first major challenge as CEO, I personally look forward to joining many of you to walk the 65km’s at the 65K Walkathon in Sydney on the 29 April (I might be crawling at the end!) to raise important awareness and much-needed funds to support our work.

Thank you once again for your ongoing dedication and support – none of the incredible things we have achieved this year would have been possible without you. It’s been a big year, but looking to the future, we are excited to jump into 2023, which is certain to be an exciting and transformational year for Cystic Fibrosis Community Care.

We look forward to connecting with you all again in the new year, but in the meantime, we wish you all a very happy holidays and Happy New Year!


         Andre Carvalho, CEO                                           Kath Kaspar, Chair

23 December 2022
Category: News