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! 

Joining Consumer Connect is free and easy to do - all you need to do is create an account.

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

NEXT SESSIONS

Monday, 12th December at 6.30-7.30pm (AEDT) 1hr - More details to follow 

Thursday, 19th January 2023 1pm - 2pm (AEDT) 1 hr - More details to follow 

Thursday, 16th February 2023 6.30 - 7.30pm (AEDT) 1hr - More details to follow 

 

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

Thursday, 24th November at 6.30pm - 7.30pm (AEDT) 1hr - "Trikafta for 6 - 11 year old's - your questions answered"

Join our host CFA CEO Jo Armstrong along with Mother & Father Kelly & Clay Lotz, Professor Adam Jaffe, and CFA President Mitch Messer. 

The Pharmaceutical Benefits Advisory Committee (PBAC) have met to discuss the listing of Trikafta on the Pharmaceutical Benefits Scheme (PBS) for 6- to 11-year-olds. Whilst the decision from this meeting will not be made public until the 16th of December, it is important to discuss what the possible outcomes mean.

This is a crucial decision which will impact the many Australian children currently living with cystic fibrosis.  

This Consumer Connect session, CFA have invited a panel of incredible people to discuss, the importance of this decision, what outcomes may be announced, and what these decisions will mean to our community.

We are thrilled to welcome Professor Adam Jaffe to the panel, as he brings with him a wealth of knowledge as to what early access means for our CF kids. Adam is a Paediatric Respiratory Consultant who specializes in children who have chest problems such as cough, asthma, chest infections and rare lung diseases. 

In addition, we are delighted to welcome Mother and Father to 7-year-old Chase; Kelly, and Clay Lotz to the panel. Kelly & Clay are doing incredible things in our community to help raise funds and awareness for Cystic Fibrosis Australia. Whilst Chase lives with CF, Kelly and Clay are doing all they can to ensure our CF kids have a brighter future.

Finally, we are pleased to welcome CFA President Mitch Messer to the Panel. Mitch was a member of the Pharmaceutical Benefits Advisory Committee for 12 years and was involved in the development of the first consumer input process to PBAC. He is also a past member of the Research Committee of the National Health & Medical Research Council.

CLICK HERE TO WATCH THE SESSION 

Thursday, 20th October at 6.30-7.30pm (AEDT) 1hr - 'Humour & Health' - proudly supported by Mediplast
Join CFA CEO Jo Armstrong, Comedian Blake Pavey and Psychologist Chris Thompson

Living with a chronic disease is difficult at the best of times, add in the additional stresses of everyday life - like holding down a job, paying bills, raising a family, plus heartbreaking life moments like losing friends and family members, drug affordability and consistent monitoring of your health and it’s no wonder that many chronic diseases are now extended to show their impact on mental health and general wellbeing.

As part of Mental Health Awareness Month, we are pleased to present this session 'Humour & Health', proudly supported by Mediplast. Please join your host CFA CEO, Jo Armstrong along with Comedian Blake Pavey and Psychologist Chris Thompson as they discuss mental health, how we each cope differently, and steps we can take to support positive well-being.  

Mental Health Month is celebrated each year in October. We encourage everyone to think about your own mental health and wellbeing, regardless of whether you may have a lived experience of mental illness or not. It gives us the opportunity to understand the importance of good mental health in our everyday lives and encourages help seeking behaviours when needed.

This Consumer Connect session is generously supported by Mediplast, Australian supplier of the PARI range of innovative respiratory products (formerly distributed by Technipro Pulmomed). The PARI range provides high quality, effective solutions for those living with significant respiratory conditions, including the cystic fibrosis community, enabling optimal treatment times and a fast return to daily activities.

Disclaimer: This session is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You should seek the advice of an appropriately qualified healthcare professional before making decisions about your own circumstances. You should not disregard professional medical advice, or delay seeking it, because of any information contained in this session. 

CLICK HERE TO WATCH THE SESSION

Join Jo Armstrong, Kyle Collis, and his family Melissa, Charli-Rose and Scarlett on
Thursday, 8th September at 6.30-7.30 pm (AEST) 
KYLE COLLIS - LIVING LIFE FEARLESSLY

Kyle lives his life fearlessly. This is the only way he knows how. Diagnosed at birth with cystic fibrosis, he was given a life expectancy of between 6 months to a year.  He firmly believes anything is possible and has not only proven this as a 36-year-old with a wife and two wonderful daughters, but also as an ultramarathon legend. Kyle tackles upwards of 50km runs for fun, currently training for his biggest event to date, a 160km ultramarathon through the Flinders Rangers in South Australia. Kyle has defied the odds he was given when he was born and has no plans on stopping. Please join your host CFA CEO, Jo Armstrong, as we chat with Kyle and his family about his journey, what it has been like establishing relationships, building careers, becoming a dad, and of course – his incredible achievements in long distance running.  
CLICK HERE TO WATCH THE SESSION

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.

2021

  • Tuesday 12th October 2021 - Jo Watson, Deputy Chair, PBAC
  • Wednesday 7th July 2021 - ‘CF & COVID-19’ - DÉJÀ VU 
  • Wednesday 3rd February 2021 - Organoid Research

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 

 

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