Lives unaffected by cystic fibrosis

Consumer Connect

*Consumer Connect is a service provided by Padlokt Pty. Ltd. for and on behalf of Cystic Fibrosis Australia. By creating an account and accessing this service you agree and adhere to the Padlokt.com Terms and Conditions of use.

Consumer Connect has been a passion project of Cystic Fibrosis Australia (CFA) and LJ Hooker, brought to life by emerging tech company Co-Star (formerly Padlokt).

Our dreams are the same - to be able to connect people, break down barriers and 'unlock the padlock'. The dangers of cross infection have resulted in the cystic fibrosis (CF) community never being allowed to just 'catch up'. 

Join the community today to surf our forums and chat about what means the most to you. Read blogs from the CF community and specialists in all fields of CF research and treatment. Best of all, you can connect in real time through our two-way live stream conversations! 

What are you waiting for? Use your key, unlock your connection.

PAST SESSIONS
(to view all past sessions please log in to Consumer Connect)

Jo Armstrong, Mitch Messer, Rory Morgan, (Parents) Rod and Donna 
“RORY MORGAN DOESN’T LIVE WITH CYSTIC FIBROSIS... IT LIVES WITH HIM”

Plus: Hear from CFA’s President, Mitch Messer as he introduces the newly developed Strategic Plan. 
Diagnosed at birth, Rory has gone through life’s ups and downs associated with cystic fibrosis (CF). He has faced the consequences of the different life choices he has made, how this has affected him both physically and mentally, and how it has guided his journey to where he is now. Having recently become the first Australian with CF to complete an Ironman triathlon, Rory is breaking down barriers and stigmas in the CF world, one awe-inspiring accomplishment at a time. Please join your host CFA CEO, Jo Armstrong, as we chat with Rory and his parents, to discuss what it was like - from first hearing the diagnosis, right through to Rory crossing the finish line as an Ironman – and what is next! CFA’s President, Mitch Messer will also explain CFA’s Strategic Plan and how our vision for the future will be achieved through a variety of goals and objectives.  
To watch the event CLICK HERE>

"It IS Time for Trikafta! And our next steps forward.”
Jo Armstrong, Jess Ragusa and Mitch Messer, Prof Adam Jaffe - Thursday, 31st March at 6.30 pm (AEDT).
Join your hosts Jo Armstrong - CEO CFA, Jess Ragusa - CF Ambassador, Mitch Messer - CFA President, and Prof Adam Jaffe from the Sydney Children's Hospital, on Consumer Connect on Thursday evening where we will be recapping our Trikafta advocacy, a summary of the news on Sunday and what it means for the community. We will also talk about next steps for CFA and our strategic plan and the people that will not benefit from Trikafta. 

Jo Armstrong, CEO Cystic Fibrosis Australia - Wednesday, 9th February at 6.30 pm AEDT
Join us on Consumer Connect for a summit on the future of Trikafta in Australia. Hear from Jo Armstrong and our panel of experts, ask your own questions and join the conversation.

Jo Watson, Deputy Chair, PBAC - Tuesday, 12th October 2021 at 6pm AEST 
Jo will join me on Consumer Connect to outline the issues currently in play and listen to consumer stories and concerns. This will be a fantastic session to have your say and hear what is holding up the PBAC’s recommendation of Trikafta.

Jo Watson has been the Chair of the HTA Consumer Consultative Committee within the Office of Health Technology Assessment in the Department of Health, since it was established in February 2017. Areas of interest include developing model pathways for patient engagement in health technology assessment, and capacity building for patient representatives. She is the inaugural Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC), and has been a consumer nominee on the PBAC since 2013. She was also the consumer nominee on the Pharmaceutical Benefits Pricing Authority (PBPA) from 2002 to 2012. She is the current Deputy Chair of the Consumers Health Forum, the peak national health consumer organisation in Australia, and has been a Board Director since 2012.  Jo has been a community representative and patient advocate in the Australian HIV response since the early nineties, including as the Executive Director of the National Association of People living with HIV Australia (NAPWHA) from 1998 to 2014.   

‘CF & COVID-19’ - DÉJÀ VU - Wednesday 7th July 2021 at 6:30pm AEST
Cystic Fibrosis Australia is bringing you the latest info on COVID and CF via our dedicated platform, Consumer Connect. 
Join us on Wednesday 7th July at 6:30pm EST on Consumer Connect with your questions and concerns. 
Consult our panel of CF experts who will take you through exactly what you need to know about the risks posed by COVID to the CF community and where we are with vaccines. The sessions we hosted last year were positive in tone and attracted an enormous turnout.  With COVID still part of our daily reality here in Australia, it is time to re-visit the complex topic of COVID/CF interactions to determine what, if anything, has changed. Consumer Connect is an online video streaming platform where you can interface with expert panellists and ask questions. Our panel will consist of noted CF experts Prof Peter Wark, Prof Adam Jaffe and Prof Peter Middleton, moderated by our CEO Nettie Burke. Please join our session and pick their brains, or simply absorb the sag and CF-oriented advice that they have to offer.  

Wednesday 3rd February 2021- Organoid Research
What is an organoid? What benefit are organoids to people with CF? How does stem cell research help people with CF?  At 6.30pm on Wednesday 3rd February 2021 hear from the Organoid Experts. Adam Jaffe and Shafagh Waters from University of NSW, and Peter Wark and Gerrard Kaiko from University of Newcastle and Hunter Medical Research Institute. Their collaborative research project is predicting treatment outcomes and could change the clinical trial landscape in Australia. Click HERE to read their biographies. 

2020

  • Tuesday 15 December 2020 - Be The Best We Can Be
  • Wednesday 9 December 2020 - A tremendous Trikafta Team
  • Wednesday 25 November 2020 - Time to advocate for Trikafta
  • Monday 9 November 2020 -  Mycobacterium treatment and other emerging pathogens. 
  • Wednesday 28 October 2020 - “COVID-19 and the CF Community – what we now know and an update on how we have managed a complex situation including infection control and telehealth.”
  • Tuesday 22 September 2020 - This Is Your Life, Mitch Messer
  • Wednesday 26 August 2020 - GI stands for two things – Gastrointestinal Medicine and Great Information
  • Tuesday 11 August 2020 - CF and the NDIS
  • Tuesday 9 June 2020 - COVID-19 Update … Vaccine Research and Clinical Response
  • Wednesday 20 May 2020 - Learning from Lockdown - Set Goals, Stay Motivated and Understand Your Behaviour
  • Wednesday 6 May 2020 - 'There Is So Much To Know About COVID-19'
  • Wednesday 15 April 2020 - In A Crisis Ask An Expert
  • Wednesday 1 April 2020 - CF Health in COVID Lockdown – Mental, Physical and Dietary advice from CF Experts 
  • Wednesday 24 March 2020 - An Evening With Experts 

2019

  • Friday 6 September 2019 - Rugby for Research
  • 3 - 6 August 2019 - 13th Australasian Cystic Fibrosis Conference
  • Tuesday 25 June 2019 - Food For Thought
  • Monday 11 February 2019 - Fertilty and CF - falling pregnant, carrying babies and raising kids with CF Mummy Emmah Evans.

 

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