Cystic Fibrosis ACT in Canberra City | Medical and health

Cystic Fibrosis ACT

Locality: Canberra City

Phone: +61 437 485 454

Address: PO Box 909 2608 Canberra City, ACT, Australia

Website: http://www.cysticfibrosis.org.au/act

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25.01.2022 Spirovant Sciences, a gene therapy company developing treatments and cures for genetic lung diseases including cystic fibrosis, announced that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug and Rare Pediatric Disease Designations to its lead product candidate, SPIRO-2101, for the treatment of cystic fibrosis. #CysticFibrosis #CF #genetherapy https://www.tiogapublishing.com//article_3910241c-600e-531

25.01.2022 On Wednesday 26th August at 6.30pm Cystic Fibrosis Australia will host Keith Ooi and Tamarah Kats for a talk on Gastrointestinal medicine and CF. Register a question and participate!

25.01.2022 Give where you live this winter! All donations help Cystic Fibrosis ACT continue supporting our members living with #cysticfibrosis Thank you #canberra and Hands Across Canberra... #canberrarecoveryappeal

25.01.2022 It's OK to say I'm not OK! Research has shown that accepting negative emotions, rather than avoiding or dismissing them, may actually be more beneficial for a person. The story is how well received that statement is on the other end....

25.01.2022 A new and quicker method of diagnosing diseases in patients has been created by researchers at the University of Leeds. #CysticFibrosis #CF #CFResearch #Research

24.01.2022 Research being conducted by Telethon Kids Institute requires feedback from YOU (those who are 13+ and living with CF as well as carers responsbile for those living with CF (birth-18 years), looking at treatment options for pulmonary exacerbations. #cysticfibrosis #CF #cfresearch

23.01.2022 Moderna Therapeutics and Vertex Pharmaceuticals have entered a three-year research and licensing agreement aimed at developing gene-editing delivery techniques for the treatment of cystic fibrosis (CF). #CysticFibrosis #CF #CFACT #CysticFibrosisACT #CFNews #Vertex #Moderna #GeneEditing

23.01.2022 Wow! Cystic Fibrosis ACT had the most individual donations through the #canberrarecoveryappeal the association thanks everyone who donated to the appeal as these valuable funds help support our members living with #cysticfibrosis manage the financial burden that comes with this genetic disease. Thank you Hands Across Canberra for letting us participate and to the Canberra community for your ongoing support. #cysticfibrosis #cf #cysticfibrosisawareness #cysticfibrosisact #cfact #wearecbr #supportlocal #fundraise #donate #donatelocal

22.01.2022 "After eight years work, I’m finally holding my book in my hands - it comes out tomorrow! "Breath from Salt is the story of how parents, patients, scientists and entrepreneurs collaborated to create life saving treatments for children with cystic fibrosis, a deadly inherited lung disease. It is a powerful example of what can happen when people work together. It is a story that has given me hope in these challenging times." - Bijal Trivedi #CF #cysticfibrosis #breathfromsalt #CFF #rarediseaseawareness #venturephilanthropy #chronicillness #65roses #cysticfibrosisfoundation #trikafta #doublelungtransplant

22.01.2022 University of Iowa researchers have been awarded a grant to help research cystic fibrosis treatment using molecular therapies. #CysticFibrosis #CF #CFResearch

21.01.2022 Individuals with Cystic Fibrosis are at increased risk for sensorineural hearing loss (SNHL) due, at least in part, to the ototoxic side effects of routine CF therapies. According to Dr Shah, audiology units are rarely co-located with respiratory centers, requiring further outpatient visits to identify ototoxicity and greater expense for patients. To decrease inconvenience and patient expenses, Dr. Shah and colleagues sought to test the performance of a tablet-based audiology system that could be administered by non-audiologists, as well as a Web-based test that could be completed at home. #CysticFibrosis #CF

21.01.2022 Between 5-8 pm TONIGHT, August 25, Hands Across Canberra is holding a fundraising #happyhour If #CysticFibrosisACT receives the happiest message on a donation by a donor, the organisation will win $1,000 Share some happy (a story, a wish or message/feel free to be creative) on our donate site:... https://www.mycause.com.au/page/230007/cysticfibrosisact #CF #CysticFibrosis #Donate #Canberra #DonateLocal #CBR #CanberraRecoveryAppeal

19.01.2022 In this weeks episode of ListenABLE Dylan Alcott and Angus O’Loughlin talk to Emmah Money who is living with Cystic Fibrosis (CF).

19.01.2022 A COVID-19 Hardship Isolation Payment for workers experiencing financial hardship due to the pandemic has been created to support Canberrans who are unable to temporarily work under a COVID-19 direction or health guidance. Check your eligibility via the link below.

19.01.2022 Transplant surgeons and researchers at Washington University School of Medicine in St. Louis have received two grants totaling $10 million from the National Institutes of Health (NIH) to study how immune cells contribute to organ rejection, with the aim of improving the viability of organs after transplant. #Transplant #CysticFibrosis #CF #OrganDonation #DonateLife

17.01.2022 There are only 10 days left and Hands Across Canberra has announced that for these last 10 days ALL DONATIONS ARE BEING MATCHED! With limited matched funds remaining, all donations will be matched until matched funding runs out. Don't delay, give back and make a real difference to those in need this Winter! Donate to the #CanberraRecoveryAppeal today, visit www.handsacrosscanberra.org.au/ #cysticfibrosis #cysticfibrosisact #CFACT #canberra

17.01.2022 Amanda Bordin won the People’s Choice award in UQ’s first ever virtual 3MT competition for her presentation ‘A breath of fresh air: improving tests for bacteria in cystic fibrosis’ and won $1,000 donated by Alumni Friends. Check it out in link. http://ow.ly/5WBT50Bwcx2 #CysticFibrosis #CF #3MT #UQ #CFResearch

16.01.2022 Today, Friday 25 September, is World Pharmacists Day; a time to reflect on the work pharmacists do to ensure the communities they serve have access to the best possible medications and care. Thank you to all the Pharmacists who help support people living with #CysticFibrosis #CF #Pharmacist #WorldPharmacistDay #Pharmacy #ThankYou https://ajp.com.au//pharmacists-get-ready-to-transform-gl/

16.01.2022 #comingsoon #newcampagin #raisingawarenessforcf #cysticfibrosis #redsockcf

15.01.2022 A consortium involving Microsoft, the U.K.-based Cystic Fibrosis Trust, the University of Cambridge, Royal Papworth Hospital in Cambridge, Microsoft Research and Magic Bullet, launched a research project on Project Breathe in 2019 to investigate the viability of home monitoring for cystic fibrosis patients. #CF #CysticFibrosis #ProjectBreathe #Microsoft

15.01.2022 When you give a gift that has an impact it makes you feel like magic When you choose socks for a friend or loved one this Christmas, you’ll get to share the joy of making a real, lasting difference to the lives of people living with cystic fibrosis. Your kindness will not only bring joy, but also hope that one day CF will stand for cure found. Every person living with cystic fibrosis deserves to live a life unaffected. As well as bringing a smile this Christm...as, your wonderful gift can provide program delivery, equipment and support services vital to the wellbeing of people living with cystic fibrosis. SOCK it 2 CF by going to www.sockit2cf.com.au #MerrySockmas #newcampaign #noordinarysock #gift #sockit2cf #goodcause #togetherwecan #cysticfibrosis #cysticfibrosissa #charity #socks #giveback #makeadifference #buysocks #Christmas #wecansockit2cf #sockit2cf #powertocreatechange #redsocks See more

13.01.2022 Thank you to some of our members who shared their experiences for the purpose of the Kids in Interstate Shared Care Project. A special thanks to Health Care Consumers' Association Inc who interviewed a lot of families who travel interstate for specialist care for their children. #cysticfibrosisact #cysticfirosis

13.01.2022 Today is the final day of the #CanberraRecoveryAppeal. All donations are being matched- your support will be DOUBLED. Let's hit #CysticFibrosisACT target of $35,000 https://www.mycause.com.au/page/230007/cysticfibrosisact... All donations go a long way in keeping the organisation's ability to provide support to our members going for longer during these environmentally challenging times. Thank you #Canberra and Hands Across Canberra

12.01.2022 Congratulations to lead researcher Associate Professor Keith Ooi whose winning submission, for the inaugural $50,000 grant delivered by the Australian Cystic Fibrosis Research Trust, will examine gut inflammation, and the microbiome, and hopefully lead to the development of personalised treatments such as CF-specific probiotics. #CysticFibrosis #CF #CFResearch #CysticFibrosisAustralia #cysticfibrosisresearchtrust

10.01.2022 Former Wallaby and Western Force player, Nathan Charles will take over as the new CEO for RugbyWA. Charles lives with Cystic Fibrosis and remains the only person in the world to play a contact sport with the condition professionally. #CysticFibrosis #CF #NathanCharles #Rugby #RugbyWA

10.01.2022 Sir Bob Elliott, who has died at the age of 86, spent more than 60 years improving the quality of life for children.

08.01.2022 A research team at Dalhousie University has found that a drug for cystic fibrosis (Trikafta) has the potential to treat 90 per cent of people living with the disease, but it’s not available in Canada. #CF #CysticFibrosis #Trikafta

08.01.2022 Opportunity to attend a webinar to view an Election Forum about community-based health care in the ACT. Friday 28 August, 2pm-3.30pm Minister Stephen-Smith (ACT Labor Party), Mrs Dunne MLA (Canberra Liberals) and Minister Rattenbury (ACT Greens) will present their parties positions and approaches to key issues in community-based health care to relevant community stakeholders.... The four key focus areas of the forum on community-based health care is: Access Integration Prevention Mental Health. Interested? Register below #canberra #australiancapitalterritory #health

08.01.2022 Canberra residents whose access to the library is currently impacted by COVID-19 can sign up for this trial and provide feedback.

07.01.2022 Donate to the #CanberraRecoveryAppeal between 9am and 10am this morning and #CysticFibrosisACT could win a bonus $1,000! https://www.mycause.com.au/page/230007/cysticfibrosisact Thank you #Canberra!... #CysticFibrosis #CF #CFACT #Donate #GiveWhereYouLive #Cure4CF #Support #SupportLocal

06.01.2022 BEAT CF is a research project aiming to optimise the management of lung exacerbations in people with CF.

06.01.2022 A survey conducted in 2018, was distributed online to the CF community, including adults and children with CF, their family members, and healthcare professionals. Its questions aimed to assess the impact of GI problems on daily life. #CysticFibrosis #CF #GI https://cysticfibrosisnewstoday.com//gi-problems-common-i/

06.01.2022 Picked up a very full donation tin Page Bottler thank you for supporting Cystic Fibrosis ACT. Every coin counts! If your business would like to host a donation tin for Cystic Fibrosis ACT please contact the office. #pagebottler #canberra #supportlocal #wearecbr #canberralocals #cysticfibrosis #cf #cysticfibrosisact #donate #donation #thankyou

06.01.2022 The donations coming through the #CanberraRecoveryAppeal are helping Cystic Fibrosis ACT continue to address the financial burden of #CysticFibrosis for our members in a very difficult fundraising environment. Please LIKE this post, and Cystic Fibrosis ACT will be in the running for an extra $1,000 Like and/or SHARE this post between 11- 2 pm today 27 August 2020... #CysticFibrosis #CF #CysticFibrosisACT #CysticFibrosisAustralia #CFACT #Donate #DonateLocal #Support #SupportLocal #LikeforLike #Like

04.01.2022 There are only 7 days left of the #CanberraRecoveryAppeal With ALL donations currently being matched, your donation will be DOUBLED! All donations will go a long way in keeping Cystic Fibrosis ACT's doors open. ... #CysticFibrosis #CF #CysticFibrosisACT #Canberra #WeAreCBR #Fundraise #donate #SupportLocal Hands Across Canberra

04.01.2022 Nothing feels better than giving a gift that really makes an impact. When you choose SOCK it 2 CF socks for a friend or loved one this Christmas, you’ll get to share the joy of making a real, lasting difference to the lives of people living with cystic fibrosis. Your kindness will bring joy this Christmas and hope that one day soon a cure for CF will be discovered. Every person living with cystic fibrosis deserves to live a life unaffected. As well as bringing a smile this Ch...ristmas, your wonderful gift can provide program delivery, equipment and support services vital to the wellbeing of people living with cystic fibrosis. SHOP NOW https://www.sockit2cf.com.au/ #MerrySockmas #newcampaign #noordinarysock #gift #sockit2cf #goodcause #togetherwecan #cysticfibrosis #charity #socks #giveback #makeadifference #buysocks #Christmas #wecansockit2cf #powertocreatechange #redsocks

04.01.2022 #comingsoon #newcampagin #raisingawarenessforcf... #cysticfibrosis #redsockcf

03.01.2022 Cystic fibrosis drug Kaftrio to be available on NHS after European licence granted. Kaftrio is a 'triple combination therapy' containing three drugs - ivacaftor, tezacaftor and elexacaftor - which improve lung function and help those with the hereditary disease breathe more easily. #CysticFibrosis #CF #Kaftrio

03.01.2022 The U.S. Food and Drug Administration (FDA) has approved Vertex Pharmaceuticals‘ Kalydeco (ivacaftor) as a treatment for infants as young as four months with cystic fibrosis (CF) caused by certain mutations. #CysticFibrosis #CF #Kalydeco #Ivacaftor #Approved https://investors.vrtx.com//fda-approves-kalydecor-ivacaft

03.01.2022 FREE EVENT - Magic Mania will be held on Monday 14th December 2020 , 11:00 am, at the Hellenic Club, in Woden, including live streaming and stage recording. This is a project by Magic Mania for special needs children and families in the ACT and region made possible by the generosity of local business and professional people in the ACT and local area. A great opportunity especially because the Special Children's Christmas Party was cancelled this year. Please note they are at...tempting to be as Covid safe as possible and social distancing will apply as per the indoor venue requirements of the Hellenic Club of Canberra. Please RSVP to [email protected] by 4 December to book your tickets.

01.01.2022 THANK YOU! Cystic Fibrosis ACT is grateful to operate in a community that is so generous in the most difficult of times. Thank you to Hands Across Canberra for inviting Cystic Fibrosis ACT to be part of the #CanberraRecoveryAppeal ; what an amazing effort - more than $400,000 raised across the community sector. These donations help the organisation continue to operate in these financially tough times when fundraising efforts have been put on the back burner. ... Show your thanks by commenting below! #CysticFibrosis #CF #Donate #Canberra #WeAreCBR #CanberraLocals #Nonprofit #CFACT #CysticFibrosisACT #ThankYou