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24.01.2022 Today is International Day of Charity, a day chosen because it marks the passing of Mother Teresa, whose life was dedicated to charitable causes. In Australia there are more than 50,000 charities and this year, many are doing it tough. Cystic Fibrosis Queensland has seen a 144% increase in demand for services this year, whilst fundraising and donations are down. This year, every dollar counts. Help support Cystic Fibrosis Queensland by making a donation today: https://sforce.co/3iaPQtv Make sure to hold on to your new Donation Dollars, we'll be letting you know soon where you can drop them off!

24.01.2022 MASKS...PLEASE READ (Copied and edited) FIRSTLY: Your homemade fabric masks are only good to wear for a maximum of one hour. Once soaked with moisture from your breath, they no longer provide you any protection. The droplet particles from a virus can easily pass through your mask once it becomes damp. ... Once you take it off...DO NOT toss it on the front seat of your car or hang it from your rear vision mirror. EVERYTHING your mask touches is contaminated. DON'T hang it in front of your car air vent to dry, you’ll just spread the germs everywhere! GOT IT? Remove by pinching the elastic sides, never grab the front of your mask and carefully place it into a zip lock bag or washable laundry bag, so you can toss it straight in the wash when you get home. Hang out in direct sunlight until completely dry before wearing again. SECONDLY: The Blue surgical masks you see nurses wear. They are good for 4 hours continuous use, as they have an impermeable membrane that takes longer to become soaked with moisture but must be disposed of directly after use. This DOES NOT mean throwing them in your handbag for later on...you’ve just spread the germs to your bag and all of it’s contents. Get it? THROW THEM IN THE BIN! THIRDLY: N95 respirator masks. These are in extremely short supply. Every hospital in Australia is hiding these under lock and key! They will provide 8 hours of protection from airborne droplets they need to be check fitted and are tight and uncomfortable to wear. BUT if you are diagnosed with COVID-19 or caring for someone with COVID these are the masks you should be wearing to protect yourself. Again, they are disposable. THROW THEM OUT! AND DON'T FORGET.... Use hand sanitiser BEFORE and AFTER removing your mask. And before touching anything else! AND DON'T tuck them under your chin and pull them back up again. If you do this you will transfer the virus straight from your neck onto your mask. If you want to eat or drink, you need to: 1. Perform hand hygiene 2. Take the mask off (dispose/Put in zip lock bag for washing later) 3. Perform hand hygiene 4. Eat/drink 5. Hand hygiene 6. New mask on

22.01.2022 Watching the news this morning with people complaining about having to wear masks in Covid hot spots is crazy. It doesn't take a rocket scientist to work out that you are less likely to pick up anything wearing a mask. But for those who don't get It heres a picture. Skyla has grown up wearing a mask. Yes they are annoying and sometimes uncomfortable, yes it can fog your glasses and yes sometimes its weird when its not something your used to but suck it up already. Wearing a mask will slow the spread of Covid. If you don't want to wear one STAY HOME. Its simple really

22.01.2022 Big thanks to the Rabbitohs tonight for raising funds and awareness for Cystic Fibrosis

21.01.2022 Looking for a new mask, why not support Cure4CF and order some of these :)

20.01.2022 Today marks the start of DonateLife Week. This week, please jump online and register (it takes less than a minute) and have that all-important conversation with your family. We know how important the gift of organs and tissue can be For more info and to register, visit: www.donatelife.gov.au

19.01.2022 Someone stole my Rose Lungs Clothing jumper. Looks pretty good on her to #RoseLungsClothing #CFtreatments #CysticFibrosis #CFlife Rose Lungs https://www.facebook.com/roselungsclothing/

19.01.2022 10 days into our 5th admission for the year :( waiting in clinic to find out when we can go home #fucf

18.01.2022 Love mail day thanks #roselungsclothing can't wait to wear them #cysticfibrosis

16.01.2022 This is absolutely amazing and shows how far we have come!!! This is a REAL side by side lung X-ray of a patient who has been taking Trikafta for just 9 months!!! It truly is a miracle drug and the results of almost all who are on it are unbelievable. Years of science, research, your support and those in the fight who never gave up... have brought us here. I have everything crossed Skyla will soon have access to this amazing drug. It could change her life forever

16.01.2022 Thank you so much QCoal and Cystic Fibrosis Queensland this will make life much easier living so far away from Brisbane. Skylas team will know straight away what her lung function is doing for the comfort of our home. What a awesome little machine. I can see instant results on my phone. Thank you so much

12.01.2022 The trials for this drug are beyond amazing. The results of this drug gives me so much hope that Skyla will out live me. I have everything crossed we get access to it really soon.

11.01.2022 5 years ago I shared this on this page but today I think its just as important people understand CF is invisible and it isn't always easy for you to see how "Sick" Skyla is. Some people find it hard to understand how Skyla can be "sick" when she can go to the movies, play at the park or even spend the day at the beach. The thing with CF is it is an invisible disease she never really looks "sick" and our whole life is about weighing up the risk. Do I keep her inside all day, ...every day till she feels 100% or do we go out and enjoy life while we can? This is one of the hardest parts for me and Rod as her parents, we need to play this balancing game between what's best for her health, what's best for her mental health and letting her live. A few parts of this blog really stood out to me "health is so much more than just the treatments we do or medications we take. The point of our doing is being at the heart of all of our endeavours to be healthy is the desire enjoy and experience life, something that isn’t possible for the safety of our living room" And Does this one scenario add particular meaning and value to to my life? And if the answer is yes, I take all the precautions I can and embrace it wholeheartedly. Because if I do something in fear I may as well not do it at all fear is a killer of joy. And if I don’t feel it is something that will add meaning to my life, then I give it a miss and know there when the time is right for something even greater, the opportunity will present itself." Not understanding our lives and the decisions we make is ok. But know not one is made on a whim, we always think long and hard about every single one http://www.jessicabean.com.au/choice/why-risk-it/

11.01.2022 Love my new @roselungsclothing jumper #cfawareness #Roselungsclothing #buyingforagoodcause Check them out https://www.facebook.com/100142614687579/posts/307907390577766/

04.01.2022 This is fantastic news for us

03.01.2022 Unfortunately we heard today that Trikafta is not on the Nov PBAC agenda. Trikafta is the drug Skyla NEEDS, it has done amazing things for people world wide and I have everything crossed it will be Skylas miracle. Orkambi has done amazing things for many but Skyla cant have it . So again we have to make noise to get Trikafta listed on the PBS and made available for everyone in Australia who needs it not just us. The page below is going to help us and everyone waiting on Tr...ikafta make some noise. Likes and shares of the YesToTrikafta post (and likes of the page) will help the campaign gain momentum. Thanks #SkylaNeedsTrikafta #YesToTrikafta

03.01.2022 Get behind this awesome campaign. Well done Emmah what a fantastic opportunity for the CF community to spread awereness and raise funds. #palmolivecrazyhairchallenge #Palmolivecrazyhair #thankyou #cysticfibrosis

02.01.2022 Australia - we need your help... Did you know the life expectancy of a CF sufferer is only 37 years old? There isn't time! Join us in a movement to help Australian Cystic Fibrosis sufferers fight their invisible disease. We need miracle drug Trikafta added to the PBS!... PLEASE USE YOUR VOICE AND YOUR POWER!

01.01.2022 Our first time doing HITH down in Brisbane. 10 days in and hoping to go home Monday