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, to break down barriers, to 'unlock the padlock'. The dangers of cross infection has resulted in the CF Community not having the ability to just 'catch up'. 

Join the community today to join forums and chat about what means the most to you, read blogs from the CF Community, specialists and the best from the CF world and most excitingly - connect in real time through our two way live stream conversations. 

What are you waiting for, use your key, unlock your connection.

NEXT SESSION

Jo Watson, Deputy Chair, PBAC - Tuesday, 12th October 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. 

The CF Community is so lucky to have a supporter like Jo Watson who is committed to consumer consultation. 
TO VIEW THE SESSION – LINK HERE           TO REGISTER AND PARTICIPATE – LINK HERE

PAST SESSIONS

‘CF & COVID-19’ - DÉJÀ VU - Wednesday 7th July 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.  REGISTER HERE to participate and ask questions, or CLICK HERE to view.

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. To watch the event please CLICK HERE.

Tuesday 15 December 2020 - Be The Best We Can Be

Cystic Fibrosis Australia's CF CAN (Consumer Advocacy Network) has been around for five years now and training has continued throughout this time. If we are going to Be The Best We Can Be, CFA thought some CF CAN training may come in handy. This won't be the full training, as we have traditionally set aside a full day for that, but I think we should be able to cover some of the key points and it might be a good refresher for previous graduates. An advocate is the voice of many not the opinion of one or two people and the role of an advocate is not for everyone. This is your chance to see if the role of a CF community advocate is for you. With an army of CF adovcates we will have great impact and great change. To watch the event please CLICK HERE.

Wednesday 9 December 2020 - A tremendous Trikafta Team

Across Australia we are blessed with brilliant CF clinicians and there are no two more exceptional than Peter Wark and Claire Wainwright.​ Claire and Peter will both be on Consumer Connect on Wednesday 9 December at 6.30 pm to answer all your questions about Trikafta for adults and children, its effectiveness in clinical trials and what we can hope for in the future.  To watch the event please CLICK HERE.

Wednesday 25 November 2020 - Time to advocate for Trikafta

In one months time we find out if Trikafta will be on the PBAC Agenda for the March 2021 meeting. Now is the time to mobilse and get our ducks in a row. There is a lot of work to do and it is crucial that we engage with all the important stakeholders. Join Nettie Burke, CEO of Cystic Fibrosis Australia (CFA) for a Consumer Connect session where she will share CFA’s Trikafta Advocacy plans. 

Monday 9 November 2020 -  Mycobacterium treatment and other emerging pathogens. 

It is very complex area and the following topics will be addressed … 

  • what mycobacteria are 
  • how they impact CF  
  • what are the treatment options, what to expect and how to get through it 
  • what are the common outcomes

Professor Scott Bell is the Chief Executive of the Translational Research Institute and a Senior Physician of the Adult Cystic Fibrosis Centre at TPCH (>320 patients) where he has worked since 1996 in Brisbane. He leads the Lung Bacteria Laboratory at UQ’s Children’s Health Research Centre. Scott has >260 peer reviewed publications and has received grant support >$22 million over the past 10 years. His research interests include the CF microbiology, acquisition pathways for human infection and has a long history of supporting multi-disciplinary research. He has been principal investigator on numerous pivotal CFTR modulator trials and is global principal investigator on a novel approach to combination therapies for CFTR correction. He was the Editor-in-Chief of the Journal of Cystic Fibrosis from 2013 until 2020. To watch the event please CLICK HERE.

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.”

Prof Adam Jaffe, Paediatric Respiratory Consultant at Sydney Children’s Hospital and the John Beveridge Professor and Head of Paediatrics at the University of New South Wales and A/Prof Peter Middleton is trained as a Respiratory & Sleep Medicine Physician. He is the Cystic Fibrosis Centre Director at Westmead Hospital in Sydney.  To watch the event please CLICK HERE.

Tuesday 22 September 2020 - This Is Your Life, Mitch Messer

The Cystic Fibrosis (CF) Community is full of inspirational people who have overcome major obstacles and remarkable people who have helped others do just that. One name stands out across the whole of Australia and that is Mitch Messer, former Cystic Fibrosis WA Board Member, current Cystic Fibrosis Australia (CFA) Board member and Australian Cystic Fibrosis Research Trust Chair. Mitch recently celebrated a major birthday so CFA has decided to celebrate this significant milestone in his marvelous life’s journey. You’ll be entertained and enlightened by an extraordinary story about a dedicated professional who has left a wonderfully indelible mark on our community. And Mitch promises, the best is yet to come!

Wednesday 26 August 2020 - GI stands for two things – Gastrointestinal Medicine and Great Information

Over the past months Consumer Connect has shone a light on COVID-19, Mental Health, Staying Healthy in Lockdown and even Pandemic Research. Gastrointestinal medicine is a vast subject and Keith Ooi and Tamarah Katz are ready to answer all your questions. Topics could include the microbiome, inflammation, diet, diet quality, suppliments, gastroenterology & hepatology, gastrointestinal diseases and cancers, pancreas, pancreatic insufficiency, probiotics and clinical trials.

Tuesday 11 August 2020 - CF and the NDIS

For too long NDIS access has been denied to people with cystic fibrosis (CF).  A great deal of work has been done behind the scenes and we would love to share this with you on Consumer Connect. You will have the opportunity to chat with some outstanding CF advocates, have your say about the current inequity and find out how to get involved in this very important campaign. 
Julia Langrehr is the Executive Officer of Cystic Fibrosis SA, a position she has held since March 2017.  She is passionate about improving the lives of people living with cystic fibrosis.  In her role she advocates for individuals and groups in South Australia and is a driving force behind the CF Federation submission to the Joint Parliamentary Standing Committee for inclusion of CF on the NDIS.
Pia Sappl has over 20 years of lived experience as an adult with CF, having been diagnosed at age 19. She is a postdoctoral research scientist who has managed cutting-edge research projects in leading national (Monash University) and international research institutes (EMBL). She contributes to several CF reference groups and advisory committees and is the founder and coordinator of the Australian CF Hub; an online community group for Australian adults with CF. Pia's combination of professional background and lived experience gives her a unique perspective. She is passionate about securing NDIS support for people with CF and recently submitted a consumer proposal to the Joint Parliamentary Standing Committee supporting the inclusion of CF on the NDIS.

Tuesday 9 June 2020 - COVID-19 Update … Vaccine Research and Clinical Response

Professor Scott Bell and A/Prof Dominic Keating will discuss the many COVID-19 clinical trials underway around the world.
There will be lots of discussion and opportunities to ask questions about the current state of play of the Coronavirus and CF in Australia.  As Chair of the ACFDR, Scott Bell will also take questions relating to the recent increase in the predicted median life expectancy to 47 years for people with CF.

Wednesday 20 May 2020 - Learning from Lockdown - Set Goals, Stay Motivated and Understand Your Behaviour

For a change from the COVID-19 Medical Sessions recently this session will focus on motivation, goal setting and behavioural psychology. Presenters: Nathan Charles and Scott Taylor.

Wednesday 6 May 2020 - 'There Is So Much To Know About COVID-19'

Keep up with the experts Tom Kotsimbos from the Alfred Hospital in Melbourne and Tonia Douglas, CF Centre Director from the Queensland Children’s Hospital. They will be sharing their COVID-19 expertise and knowledge as it relates to people with CF and their support networks.  Sign up now and submit your questions. This session is all about the Global Crisis and Australia’s place in this Pandemic.

Wednesday 15 April 2020 - In A Crisis Ask An Expert

“In a Crisis Ask An Expert” – CF Centre Directors including Sharon Hunt from Westmead will be on Consumer Connect this Wednesday 15 April at 6.30 pm to answer all your questions. Our Paediatric Psychologist will share how to manage children’s fears about what is happening in the world and the changes to their routines.”

Wednesday 1 April 2020 - CF Health in COVID Lockdown – Mental, Physical and Dietary advice from CF Experts - Speakers:  Michael Doumit - CF Physiotherapist, Anthony Talbot - CF Psychologist, Tamarah Katz - CF Dietitian.

Wednesday 24 March 2020 - An Evening With Experts - Professors Peter Wark, Adam Jaffe and Peter Middleton discuss the Coronavirus and CF.

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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