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.
6.30 pm (AEST), 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. Join us on Tuesday 11 August at 6.30pm AEST. To register for the event please CLICK HERE. To watch the event please CLICK HERE.
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.
6.30 pm (AEST), 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.
Sign up now and submit a question or three here.
Here is a little bit about our Consumer Connect Guest Speakers …
Tamarah Katz is a clinical dietitian and has been a member of the Cystic Fibrosis Team at Sydney Children’s Hospital for 13 years. During that time she has partnered with her multidisciplinary care team in over 20 publications and has contributed her expertise to five national guidelines including the management of CFRD, pancreatic enzyme replacement therapy and the recent Australasian nutrition guidelines.
A/Prof Keith Chee Y. Ooi (MBBS, FRACP, PhD) is a clinician-investigator at University of New South Wales and Sydney Children’s Hospital, Randwick. He has interests and expertise in CF gastroenterology with >100 journal article publications. He has been awarded >AUD8 million in research funding, including the NHMRC Emerging Leadership Award.
6.30 pm (AEST), 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.
6.30 pm (AEST), 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.
Presenter - Nathan Charles - Never one to shy away from a challenge, Rugby legend Nathan Charles is the only person with CF to play full contact sport at the international level. He is passionate about using my profile to raise awareness for CF and support Cystic Fibrosis Australia. Nathan is a high achiever to say the least and knows how to set goals and stay motivated.
Presenter - Scott Taylor - Using his deep knowledge of human behaviour, Scott and his partners at Perx have designed an app to help people living with cystic fibrosis and chronic illness. Perx helps people stay on track with their treatments, avoid unnecessary hospitalisations and improve their well-being. Scott understands what makes people tick and how to encourage and support good behaviours.
6.00 pm (AEST), 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
6.30 pm, 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.”
6.00 pm AEDT, 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
Coronavirus is a highly serious disease, but not at all unbeatable. Like any health issue it must be approached holistically. We can fight coronavirus on every front, and the more we can bring together specialised knowledge about coronavirus and cystic fibrosis, the more ground we will win. Join us for an in-depth discussion of everything from quarantine diets to apartment-friendly exercises to circadian rhythms and everything in between.
Wednesday 24 March 2020 - An Evening With Experts
Professors Peter Wark, Adam Jaffe and Peter Middleton will lead a Consumer Connect Session about the Coronavirus and cystic fibrosis.
You can get your questions answered by three of the best clinicians in the country. Also, you will be able to hear from the CF Community first hand and join in the live discussion.
Friday 6 September - Rugby for Research
Rugby for Research was a campaign for CF but not necessarily about CF. First off we experimented with a new fundraising format. The event was not only a panel lunch but also an online simulcast meetup. If you would like to view the Rugby for Research panel discussion on Consumer Connect click here.
3 - 6 August 2019 - 13th Australasian Cystic Fibrosis Conference
The 13th Australasian Cystic Fibrosis Conference (ACFC) provides a collaborative and educational forum for the CF community and CF professionals to help advance CF research and care. In 2019 our biennial conference brings together health professionals and members of the CF community from around the world to discuss and share ideas on the latest advances in CF research, care and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF. You can watch some of those presentations on Consumer Connect now.
Tuesday 25 June - Food For Thought
Felicity Loel and Lara Mathers, dieticians from Queensland and NSW give you Food for Thought. Diet is such an important part of CF care and we all know it can be a complicated road to navigate when not only nutrition but also disease plays a part. From time to time we all need a reminder about the basics and our Food For Thought Consumer Connect session will do just that.
Please click here their step by step guide to choose probiotics.
Monday 11 February - Fertilty and CF - falling pregnant, carrying babies and raising kids with CF Mummy Emmah Evans.
Back by popular demand, the wonderfully candid Emmah Evans is joining us again. Hosted by CFSA EO Julia Langhrehr, Emmah will share her journey of pregnancy with CF, having to deal with her own health issues combined with pregnancy and then raising kids with the fear of the your own health constantly hanging over her head.
Emmah is vigilant in her compliance with her CF treatment and at the age of 24 she fell pregnant naturally with her first baby.
After many discussion's with her medical team and her own research, Emmah felt there was not enough information or “positive real” stories about being a Mother with Cystic Fibrosis.
This is when she began her page CF Mummy, a platform where she shares her pregnancy journey as well as life as a CF Mum.
Now a Mother of two Emmah has a new lease on life, a new reason for existence.
And with Orkambi now available and the advancement in Cystic Fibrosis treatment, Emmah is excited to be a positive role model within the CF community as she shares her story in Cystic Fibrosis, pregnancy and Motherhood.
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