Cystic Fibrosis Australia | Medical and health

Cystic Fibrosis Australia

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24.01.2022 IMPORTANT CALLOUT: The Med Collective wishes to interview a number of individuals to understand their lived experience with CF. If you are the parent or caregiver of a child with CF or are in your 20-30's and are currently managing CF, The Med Collective would like to get your insights to improve its training programs for medical professionals.... Interviews will happen via Zoom meetings during Q1 2021, will take ~1 hour per =interview, and will be recorded. The interview will be in the format of a relaxed chat, you can opt out of answering questions at any time. If you are interested in talking to the Med Collective please contact [email protected] to be put in touch with them.

24.01.2022 Today CFA did safeTalk training with Kim. It was a great session and the role playing was extremely valuable.

24.01.2022 Online at the EUR CF Digital Conference. The history of CF and most importantly ‘What Next’ in the yellow spot. I guess there will be a lot of talk about Trikafta.

23.01.2022 LIVE NOW on Consumer Connect: On Wednesday the 25th of November at 6:30pm we will talking TRIKAFTA The significance of this drug to the CF Community cannot be overstated, and we need to start campaigning now to make sure it gets funded next year! https://bit.ly/2J2SK6H

23.01.2022 Gastroenterology Services in Australian CF Clinics Below is a link to a 5 minute survey which we urge you to fill out if you are an adult with CF, or a carer of a child or adult with CF. Survey closes Friday 19th March... https://bit.ly/3bXoepQ

22.01.2022 Brad is an inspiration

22.01.2022 $12,500 per annum for researching brilliant new ideas in CF research. If you are a PhD student based in WA and studying CF then make sure you apply for the CFWA Top-Up Scholarship! Contact: [email protected] More info: https://bit.ly/2S9VtN8

19.01.2022 Support #42forCF Bradley lives with CF and is committed to showing kids and adults that ALLL our lives can be active and energetic and just plain awesome - so he is running a whole Marathon on August 12th! CFA supports Bradley and we hope that you will join us either online or in person for his big day.... https://www.youtube.com/watch?v=Uz3OyenNiag https://bit.ly/3ctbsPz

19.01.2022 The Med Collective wishes to interview a number of individuals to understand their lived experience with CF. If you are the parent or caregiver of a child with CF or are in your 20-30's and are currently managing CF, The Med Collective would like to get your insights to improve its training programs for medical professionals. Interviews will happen via Zoom meetings during Q1 2021, will take ~1 hour per =interview, and will be recorded. The interview will be in the format... of a relaxed chat, you can opt out of answering questions at any time. If you are interested in talking to the Med Collective please contact [email protected] to be put in touch.

19.01.2022 TONIGHT on Consumer Connect: On Wednesday the 25th of November at 6:30pm we will talking TRIKAFTA The significance of this drug to the CF Community cannot be overstated, and we need to start campaigning now to make sure it gets funded next year! https://bit.ly/2J2SK6H

18.01.2022 TWO HOURS TO GO: TONIGHT at 6:30pm, Consumer Connect is extremely proud to be hosting Professor Scott Bell, the Chief Executive of the Translational Research Institute for an in-depth talk on Mycobacterium: Risks and Strategies https://cfa.padlokt.com/consumer-connect

14.01.2022 Last night on Consumer Connect we hosted an in-depth session on CF and Mycobacterium. We really got to grips with this important CF issue and the questions from our audience were sharp as always! Special thanks to Professor Scott Bella and Professor Rachel Thompson for your amazing insights https://cfa.padlokt.com//mycobacterium-treatment-and-other

13.01.2022 Many of you in the Community will know about the purpose and importance of Beat CF. For those of you who are unfamiliar, this is a great breakdown: https://vimeo.com/376288274

12.01.2022 Potential Gene Therapy, SPIRO-2101, Named Rare Pediatric and Orphan Disease by FDA https://cysticfibrosisnewstoday.com//potential-cf-gene-t/

12.01.2022 30 MINUTES TO GO: Tonight at 7pm AEST: The many faces of Mitch Messer! Join us on Consumer Connect to hear about significant milestone in his life and his CF journey. So much has changed over 60 years.... Register and attendance link: https://cfa.padlokt.com/consumer-connect

12.01.2022 Bradley Dryburgh is all set to run a marathon for CFA on December 12th. Bradley lives with CF and is committed to showing kids and adults that ALLL our lives can be active and energetic and just plain awesome. CFA supports Bradley and we hope that you will join us either online or in person for his big day. #42forCF... https://www.youtube.com/watch?v=Uz3OyenNiag https://bit.ly/3ctbsPz

11.01.2022 Support #42forCF Bradley lives with CF and is committed to showing kids and adults that ALLL our lives can be active and energetic and just plain awesome - so he is running a whole Marathon on August 12th! CFA supports Bradley and we hope that you will join us either online or in person for his big day. ... https://www.youtube.com/watch?v=Uz3OyenNiag https://bit.ly/3ctbsPz

10.01.2022 Please join me to plan our campaign to access Trikafta.

09.01.2022 FDA Approves CF Treatment Kalydeco for Infants as Young as 4 Months https://cysticfibrosisnewstoday.com//fda-approves-cf-tre/

08.01.2022 What a Guy. Mitch Messer has done so much for the CF community. Hear about his life of 60 years LINK https://cfa.padlokt.com/consumer-//your-life-mitch-messer

07.01.2022 LIVE NOW: Consumer Connect is currently LIVE and we are proud to be hosting Professor Scott Bell, the Chief Executive of the Translational Research Institute for an in-depth talk on Mycobacterium: Risks and Strategies https://cfa.padlokt.com/consumer-connect

06.01.2022 For Benefit Medicines is a Social-Enterprise pharmaceutical company which benefits Australian patients by giving 100% of profits to patient support and medical research foundations. The more FBM products sold, the more Australians benefit. https://www.forbenefitmedicines.com.au/

05.01.2022 Cystic Fibrosis Australia has been custodian and funder of the Australian CF Data Registry since 1998. In 2016 Monash was appointed to take the ACFDR to the next level and it is now a very important clinical improvement tool for all CF Centres. Since the move to Monash consumers have always been appointed to the Steering Committee. We are look for a parent/partner/carer/sibling/grandparent representative to work closely with CFA, our patient reps and clinicians to ensure the ACFDR meets and exceeds the need and expectations of the CF community. Email me if you are interested in the position. [email protected] I can guarantee it will be informative and your input valued enormously.

05.01.2022 URGENT CALLOUT: A pharmaceutical company that supports CF needs feedback from our community about mucolytics. The ongoing dialogue between consumers and researchers/suppliers is what keeps CF care top notch. If you are willing to help in this urgent matter please contact: [email protected]

04.01.2022 CFF Awards $3.3M to Advance Inhaled Antibiotic for Resistant P. aeruginosa Infections https://cysticfibrosisnewstoday.com//cff-awards-3-3-mill/(CFF,with%20cystic%20fibrosis%20(CF).

04.01.2022 BUILD YOUR BUSINESS WITH CFA CFA's famous markets have moved online and we are offering a fantastic introductory rate for stallholders. Contact [email protected] for more information or visit: https://bit.ly/31I2rPk

03.01.2022 TONIGHT at 7pm AEST: The many faces of Mitch Messer! Join us on Consumer Connect to hear about significant milestone in his life and his CF journey. So much has changed over 60 years. Register and attendance link:... https://cfa.padlokt.com/consumer-connect See more

03.01.2022 TWO HOURS FROM NOW: On Wednesday the 25th of November at 6:30pm we will talking TRIKAFTA The significance of this drug to the CF Community cannot be overstated, and we need to start campaigning now to make sure it gets funded next year! https://bit.ly/2J2SK6H

03.01.2022 Home Monitoring of Lung Health Possible With NuvoAir System, Studies Report https://cysticfibrosisnewstoday.com//nuvoair-system-allow/

03.01.2022 Cystic Fibrosis Western Australia Top Up Scholarship: $12,500 per annum for researching brilliant new ideas in CF research. If you are a PhD student based in WA and studying CF then make sure you apply for the CFWA Top-Up Scholarship! Contact:... [email protected] More info: https://bit.ly/2S9VtN8 See more

03.01.2022 LIVE NOW: The many faces of Mitch Messer! Join us on Consumer Connect to hear about significant milestone in his life and his CF journey. So much has changed over 60 years.... Register and attendance link: https://cfa.padlokt.com/consumer-connect

02.01.2022 MARATHON for CF: One of the most inspiring responses to the COVID lockdown has been the resilience in the CF community and their commitment to staying active. Certain individuals are used to going above and beyond, and we want to cast the spotlight on Bradley Dryburgh, who is all set to run a marathon for CFA on December 12th. Bradley lives with CF and has no long distance background, but he is committed to showing kids and adults that our lives can be active and energetic an...d just plain awesome. CFA is all in with Bradley on his amazing adventure and we hope that you will join us either online or in person for his big day. #42forCF https://www.youtube.com/watch?v=Uz3OyenNiag https://cysticfibrosis.grassrootz.com//42forcf-bradley-j-d

01.01.2022 Support #42forCF We want YOU to run for a CF cure! Bradley Dryburgh lives with CF and is committed to showing kids and adults that ALLL our lives can be active and energetic and just plain awesome - so he is running a whole Marathon on August 12th!... Run WITH Bradley by recording yourself running for CF posting it on your socials and tagging Bradley and CFA! Bradley Dryburgh: https://www.instagram.com/bradleyjdryburgh/?hl=en https://www.youtube.com/watch?v=Uz3OyenNiag Donation link: https://bit.ly/3ctbsPz