Mum/Carer Q&A for Cystic Fibrosis and Lung Transplant

My First Video with my MUM!!!! I had my mum answer questions that people sent in. Enjoy x All your questions about being a parent and carer of someone with CF and transplant recipient. https://youtu.be/BTrdndEuL0Y

Hisense HR6BF157R 157L Bar Fridge at The Good Guys

Through the fantastic fundraising efforts of Tony Tophat Moroney and pricing that befits the name The Good Guys - CFQ will be delivering 44 fridges to Lady Cilento Children's Hospital early 2017. These fridges will be in Wards 9a and 10a allowing our CFQ families to provide pre-cooked meals for their children. The CFQ team sends a huge vote of thanks to you ALL for helping us to make this happen for our members. https://www.thegoodguys.com.au/hisense-157l-bar-fridge-hr6bf157r

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The CFQ office will be closed from midday 23 December until 3 January. If there is anything urgent please phone Anne our Community Services Manager on 0437 798 484 or Petrina our CEO on 0412 134 820. Have a safe and happy Christmas!! From all the staff at Cystic Fibrosis Queensland

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Have you claimed your Physical Activities Subsidy for 2016? You can claim $150 for any expenses that promote physical activity including gym membership, running shoes, dance classes and weights. Get your claim in before 31 December as this is a once a calendar year payment. The link to the claim form is on our website at http://www.cysticfibrosis.org.au/qld/supportservices. Send the form to Kath at services@cfqld.org.au with a receipt. If you missed our Christmas newsletter, email Courtney at admin@cfqld.org.au to update your membership. http://us14.campaign-archive2.com/?u=88fa6c6ec26172bdafb5ff504&id=32f8b59660

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CFQ is one of the first charities in Australia to receive the Charity Tick of approval. Our donors know that they can have confidence in and trust CFQ, knowing that we are registered with and regulated by the ACNC.

The CFQ Bookshops

Twilight Running Festival 2017

We have so many great #CFQHeroes that run and fundraise in events throughout the year for us. Why not join them and get involved for the Twilight Running Festival in March 2017! Start fundraising at the link below.

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Are you feeling the heat? There are two medical cooling and heating electricity concessions that all children with CF and many adults with CF are eligible for. For more details visit our website. http://www.cysticfibrosis.org.au/qld/benefits Let us know if you missed our latest newsletter. Email Courtney at admin@cfqld.org.au to update your membership details. http://us14.campaign-archive2.com/?u=88fa6c6ec26172bdafb5ff504&id=32f8b59660

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Dear CFQ Members, We received news last Friday that the Pharmaceutical Benefits Advisory Committee (PBAC) deferred a decision on Kalydeco for children aged 2-5 years and rejected the listing of Orkambi outright. Having spoken to CF organisations in other States and Territories, we all agree that it is vitally important that we stand together as a community and push for these decisions to change. The members of the CF Federation are planning a public 'protest' on the lawn at Parliament House 7 February 2017 coordinated by CF Australia. This is the first day of sitting of both Houses for the New Year and we are inviting the CF community from across Australia to join and demonstrate our commitment to and need for access to these lifesaving drugs. This event will: Raise awareness of CF as a rare disease.  Empower the CF community by giving us the chance to be heard by the decision makers.  Make the politicians and bureaucrats sit up and listen.  Generate media coverage.  Generate public comment.  Show that the CF community is prepared to go to extreme lengths to support people with CF. Date and Time: Tuesday 7 February 2017 at 7am until late. Venue: Federation Mall at Parliament House (the grassy area at the front) Activities on the Day: 1.CF Consumer Wall… more to be revealed later. 2. Invite your federal member or senator to join you for a cup of tea and a red cupcake at the 'protest'. 3. Speeches from the CF community and politicians. 4. Wear red and CFA will have a noisy promotional device for everyone to make sure we’re noticed! If you are keen to be part of this event, please email Sharon at CFA at sharone@cfa.org.au and register your interest. Please note that Sharon will be on leave till the 10 January, all emails will be received and collated. Over the next six weeks CFA will update you on further plans. If you can’t attend the protest, you can still make your voice heard. 1.Write to your federal member/senator and ask them to attend in your place. Attach a photo of yourself or your family member with CF for the Federal member/senator to bring along on the day. 2.CFA will begin a community petition of messages for those who want to have their say on the day but who cannot be in Canberra. Their messages and concerns will be read out to the protest group and politicians throughout the day. 3.On the day, CFA will be posting constantly and uploading video content for those unable to attend. 4. Finally write to the Federal Minister for Health. The Minister can be contacted through the following means: The Hon Sussan Ley MP PO Box 6022 CANBERRA 2600 Phone: (02) 6277 7220 Email: minister.ley@health.gov.au Vertex have indicated that the earliest that they can resubmit Orkambi is July 2017, so hopefully it will get across the line then. In the meantime, people currently on Orkambi will continue to receive it. We feel confident that it will get across the line but like many, we are frustrated at the further delay. There is still a strong message of hope for people living with CF. We won’t be taking our ‘foot off the pedal’ for Orkambi but there is also good news on the horizon with no less than 17 CFTR modulators in the drug development pipeline. Two of these are in their final phase three clinical trials and one of these; Tezacaftor, like Orkambi is designed to afford relief for people with one or more copies of the more common F508del mutations. Details of all of these drugs and how you can get involved in clinical trials are available on CFA's site http://cflivesmatters.org.au/. We will win. Orkambi will be listed and this, like Kalydeco will pave the way for newer and more effective CFTR modulators to help us achieve our vision of Lives Unaffected by CF. We will not stop advocating and seeking answers until every person with CF has access to these life changing drugs.

Christmas Newsletter

Just in case you haven't updated your email with us, here's our Christmas Newsletter. CFQ remains open right up to the 23rd December.

CF Creative Space

Check out the CF Creative Space website developed by our member Justin Wall.

Cystic Fibrosis Federation Australia Noosa Triathlon 2017

Want to be part of the CFQ Team for the 2017 Noosa Triathlon Multi Sport Festival? We have 25 places available, express your interest at the link below.