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65 Km's for Cystic Fibrosis

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25.01.2022 May is 65 Roses for Cystic Fibrosis National Awareness Month. Raising awareness and sharing knowledge of this debilitating condition is so important, in turn i...t helps us to advocate and raise funds for the cystic fibrosis community. It's not too late to take the 65 Roses Challenge and help raise important awareness of this incurable disease: http://everydayhero.com.au/eve/65RosesforCysticFibrosis2020 #65Roses

25.01.2022 While we have no doubt we will get this amazing drug approved here in Australia because this one Trikafta is next level It's important to raise your voice to push things along please feel free to sign. TIA xx

25.01.2022 Do you want to help people with CF in Australia access the NDIS? The good news is you can! All you need to do is write a letter! (Deadline: Wednesday, 18 Nov 2020)...Continue reading

23.01.2022 Just so you know, this is not comfortable. If you don’t like your regular facemask, you definitely won’t like this. And this is considered NON invasive ventil...ation. Think about that for a moment. Have you ever seen someone on a ventilator? I mean not just in a Facebook photo. It’s much more haunting in real life. You know who I am not seeing complaining about mask wearing? The vast majority of my friends in the chronic illness community. Even those who may have a very valid reason for being unable to wear a mask (side note: your refusal makes life harder for them too). And you know why I think that is? Because I think we know too well the fragility and value of health and life. Many of us know what it is to gasp for every breath. Or be in so much pain we can’t do anything for ourselves- the vulnerability, the loss of dignity, the fear. Many of us have seen how overstretched our health system can be and that you can’t take for granted you will be able to get what you need the minute you need it. Or we know that being isolated in the comfort of our homes has nothing on the loneliness of being isolated for weeks or months in a stark hospital room. Too many of us know the feeling of desperation of a diagnosis with unknown outcomes and agonisingly watching and waiting and praying for a good outcome. Worst of all, many of us have seen people we have got to know and love suffer. We have seen how quickly things can change and the painful silence when suddenly, they are gone. I have visited friends in their final days of life, desperately trying to suck in air to exchange for just a little more life. I have met parents who have had their children die in their arms. We in the chronic illness community have seen our friends and community members die, more so than most. And because of that, we know life is precious. Health is precious. And there are few things we wouldn’t or haven’t done in pursuit of it. Regardless of the cost or what we give up in return. How is the trade off of wearing a mask in exchange for protecting life even a question? If I can wear a facemask (and I do, often, even before COVID) with lung function that has at times been less than 30%, chances are you can too. Afterall skinny jeans, stilettos and neck ties aren’t really comfortable either and we have all tried to squeeze into one of those for far less important reasons than saving lives or without making it a human rights issue. Wear the mask.

23.01.2022 Did you know ....The 65 Roses story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time while his Mum was on the phone fundraising pronounced cystic fibrosis as "65 Roses." Today, 65 Roses is a term often used by young children with cystic fibrosis to pronounce the name of their disease That is why the number 65 & the Rose symbol are so significant in the CF Community & why we run 65 Km’s

21.01.2022 This is a WONDERFUL program. Check it out !! Scripts of Love is a prescription medication rescue program for the Cystic Fibrosis community that’s economical, socially responsible, sustainable, and that delivers high-impact.

19.01.2022 Our time is getting closer ! All hands on deck will be needed

17.01.2022 It’s #donatelife week

16.01.2022 This is very encouraging

16.01.2022 Today is D-Day !!! Here are 3 reasons why you should donate today..... .... 1. Your donation will be matched by some of Cure4CF amazing partners. That means your donation funds double the amount of research. . 2. We need your donation because the more research we fund, the faster we'll find a cure. . 3. We only support research with the best chance of making it into the hands of CF Warriors. Join with us in the fight against cystic fibrosis on D-Day. DDAY4CF.ORG #All4TheFight #cure4cf #cysticfibrosisawareness #curecf #helpushelpthem #65roses #cysticfibrosis

15.01.2022 Thank you Curtis Pitt MP

14.01.2022 Can you imagine having to take pills before you eat anything?! Most people with CF start taking enzymes to help digest food at birth. Now if you’re mom could yo...u imagine feeding your newborn applesauce? Cystic Fibrosis doesn't just affect the lungs, just as the lungs produce a thick, sticky mucus, so does the the pancreas. The mucus in the pancreas blocks the release of enzymes needed for digestion. So that's why most people with cystic fibrosis need to take enzymes before they eat. When the enzymes are swallowed they go to work in the intestines so you can digest food and absorb the nutrients to keep your body healthy. Inside each capsule are many small beads that contain the digestive enzymes. Each bead is covered with a special enteric coating. This coating allows the beads to dissolve in the small intestine. The digestive enzymes are then released to help digest food. Enzymes work for about 45 to 60 minutes after taking them. Pills before every meal... Well I guess you can say we have our own lil appetizers. Breathe out Love! Xo #LoveToBreathe #CFawareness #CFawarenessmonth #curecf

13.01.2022 How inspiring !! Go Bradley

13.01.2022 Joining the Australian Organ and Tissue Register takes less than a minute and can transform the lives of up to 10 people If you're not already on the registe...r, visit the link below and join today. Once you've registered make sure you have a conversation with your loved ones so they know your wishes. https://donatelife.gov.au/register-donor-today

11.01.2022 Happy International Nurses Day especially to our Children’s wonderful nurses from all of us & our wee friend Asher

09.01.2022 Why bath toys with holes in them are a no no - not worth the risk

09.01.2022 This is reassuring ! First global study of COVID-19 in children with Cystic Fibrosis

07.01.2022 Super surprised & super thrilled to learn we have been nominated for the #sunshinecoast #australiadayawards2021 Thank you Emily !! Very unexpected !! And what beautiful words she wrote for our nomination We just go about doing our thing to the best of our ability with amazing support from family, friends, the CF community & the local community so to be nominated for this is really amazing ..... we are very grateful thank you . . #cysticfibrosisawareness #65roses #curecf #run #running #jettsaustralia #jettscoolum #65kms4_cf #queensland

06.01.2022 HUGE Thanks Professor Bob Elliott

06.01.2022 Little message from Kirra

05.01.2022 Wow what an absolute privilege for our Charity team 65 Km’s for Cystic Fibrosis to be nominated in the Community Group category for the Australia Day awards. Th...ank you to a young lady who we’ve never met Emily who worked at Cystic Fibrosis Queensland for nominating us What started as an idea 10 years ago !! as I ran on a treadmill at Jetts Peregian (& had plenty of time to think!) to approaching Warren & Jill the gym owners who jumped at the idea to hold our event & have been nothing but amazing at hosting us, helping organise teams & going way beyond in ensuring each year is as successful as we can possibly make it. And we are still going 10 years later ! (Minus last year 2020 - no further explanation needed !) At the end of the day us Mums Sonia & Laura are inspired daily by our children suffering with Cystic Fibrosis, by EVERYONE suffering with CF and the community as a whole My thought has always been more for awareness than anything, because if you can raise awareness then the more people that know ....the more that people will care & then we can create change So grateful for these incredible Mums who share this journey

05.01.2022 Little James has something to share

05.01.2022 Trikafta is on the March PBAC meeting agenda!! Great news with Vertex submitting it for those aged 12+ with at least one F508del mutation. From now until Feb 1...0 the community can submit comments supporting the funding of Trikafta. This is exactly when the community can make a difference - with Kalydeco, Orkambi & Symdeko there was a record breaking number of submissions and we need just as much support this time! This is our opportunity to tell the government what it is like to live with CF and why we need Trikafta so urgently! Comments can be submitted through the link below. We'll have more posts to come about how you can help. #YesToTrikafta #LifeChanging #ThankYouVertex https://www1.health.gov.au//Co/PBAC_online_submission_form

05.01.2022 Merry Christmas everyone from all of us at 65 Km's for Cystic Fibrosis Thanks to each & everyone of you for all your amazing and ongoing support even though we were unable to hold our event this year we are always so truly grateful . . Each year is never easy with the loss of young lives due to Cystic Fibrosis. It is felt far & wide through the CF Community & It’s easy to feel helpless. ... With that in mind at this time of year here are 3 gifts that you could give that every Cystic Fibrosis sufferer wants for Christmas. . . 1. More Organ donors. Sign up at https://donatelife.gov.au/register-donor-today 2. Blood become a blood/plasma donor if you are able 3. Research dollars Whether to CF Australia, your local CF Organisation, Cure4CF Foundation, Jeans for Genes or others every little bit helps. Stay safe & well xx

04.01.2022 Here’s another amazing story from someone on Trikafta, Mel, who after being in the low 20s in terms of lung function and on the transplant list, is now at 56%, pregnant and carrying a healthy baby! https://www.facebook.com/mel.tait.5/posts/10159187260571383 This is why the 90% of people eligible for Trikafta need it without delay! If you or your loved one has has CF, whether you have been fortunate to access Trikafta or are waiting, please consider submitting comments to the... PBAC. The most useful comments help let the PBAC know what it is like to live with CF and the difference Trikafta can make to our lives. Submissions close Feb 10. https://www1.health.gov.au//Co/PBAC_online_submission_form #YesToTrikafta #TrikaftaMiracle

03.01.2022 It does not get much better than the joy of watching a loved one open the gift you have chosen for them. But what’s better than that feeling, is when the item y...ou purchased also helps to support people living with cystic fibrosis. To make sure you get your socks find their way under the Christmas Tree, you need to order before 12 December. Australia Post reports that if orders are not sent out on the morning of 12 December, they are unable to guarantee delivery. We do not want you or loved ones missing out. Remember these are no ordinary socks; these socks are something special: they give back. Your wonderful gift funds program delivery, equipment and support services vital to the wellbeing of people living with this condition. Don’t wait. Don’t hesitate. Purchase your socks before they run out, order now and you can be one of Australia’s most generous supporters doing their part to help those who need it most. Buy before 12 December to get your socks for Christmas. www.sockit2cf.com.au #merrtSOCKmas #sockit2cf #cysticfibrosis #CFawareness #socks #perfectchristmasgift #noordinarysock

03.01.2022 With Trikafta approved in the US a year ago, and majority of countries still waiting for access, there’s a new campaign pushing Vertex for worldwide affordable access. Tomorrow a letter will be sent to the Vertex CEO asking for them to publish a global access policy. Anyone can sign it and it would be helpful if those in Australia could sign by midnight tonight. Click on the link below to register your support: www.vertexsaveus.org #LivesBeforeProfit #CFCantWait #YesToTrikafta

03.01.2022 How wonderful to have support from a big Australian company. Australian Cystic Fibrosis sufferers need Trikafta now. Click on the link to read how you can help TIA

03.01.2022 Just like your organs can be recycled, we recycle this post because it’s spot on If you still haven’t registered what are you waiting for ? Drop us a comment if you signed up this week, we’d love to know #DonateLifeWeek

02.01.2022 May is #cysticfibrosisawareness month which is why our #run is held this month each year. Excluding this year unfortunately- deferred for a later date TBA. Everyday for us is Cystic Fibrosis awareness..... this month doesn’t make a difference to us but it’s the time of year the CF Community speak a little more loudly. It’s not that we want to, we’d rather not have to but there cannot be change if there is no awareness. We don't like to dwell on statistics because they are... way too confronting. But bringing awareness to them helps you understand our URGENCY & why it's so important to bring a little known about disease to the forefront. . . What isn't mentioned here is that 1 in 25 people (yes could be you) are carriers of Cystic Fibrosis. Both parents need to be a carrier to pass on the CF gene & if both parents are carriers there is 1 in 4 chance of having a baby born with CF. No one generally knows they are a carrier of CF unless they have a baby born with it, carriers have no symptoms or health issues because of it. . . Although these times are extra hard, like always, we are sending our love from a distance and know that no matter the metres apart we are still a team, in this together Our event may be postponed but we have great ideas for the future!! If you would to know more about our annual fundraiser, here’s a link to one of our past events > https://youtu.be/AS31blNdxwo We are just 4 mums all with a child / children with CF & want to do all that we can to make a difference in our young children's lives & for the CF Community. We are so inspired by every single #cfwarrior & want to make a positive impact #run for #cysticfibrosis #cysticfibrosisawareness #curecf #65roses #running #peregianbeach #coolum #peregiansprings #noosa #brisbane #queensland #cysticfibrosisqueensland #cure4cf #cure4cffoundation #treadmill #fucf #all4thefight #jettscoolum #jettsgym #everydayhero #someoneweloveneedsacure #running #walking a nonstop running / walking #relay of #65kms for Cystic Fibrosis & #organdonation #donatelife #everydayhero #65kms4_cf

02.01.2022 It’s the last day of Cystic Fibrosis Awareness month, instead of our run this month we are simply taking the bins out. Sending a worldwide virtual hug to our Cystic Fibrosis Community

02.01.2022 Hi everyone it would mean EVERYTHING to us if you can please sign this submission to have Trikafta put on the PBAC This next Vertex drug is next level we hear of those already fortunate on it in the USA for example having their lung functions increase dramatically like some up to 40% !! ! Young adults are now coming off lung transplant lists & we’ve never seen so many new babies being born to CF mummies than we have now. It truly is miraculous Not only that but it has... the potential to benefit more CF patients than any of the Vertex drugs before. ***** On the PBAC it’s listed Elexacaftor/ Tezacaftor/Ivacaftor- Trikafta ***** TIA ! Xx

02.01.2022 Much love & #happymothersday to all the incredible super Mums out there Tag a special Mum you know #65roses #cysticfibrosisawareness #cysticfibrosis #mothersday #supermum

02.01.2022 Hi everyone ! I’ve come up with a great idea for 65km’s for Cystic Fibrosis & thanks to my boss Emma for her great idea to add to this Have you all heard of the Facebook page Bin Isolation Outing ? Well they have over 1 million followers worldwide & people who post are getting 1000s of likes & comments. Amazing for awareness !! ... So I’m looking for 62 people to join me & Saxon & Georgia (total of 65) to put their bin out once wearing one of our t-shirts ( if you already have one) or a red shirt/fancy dress red if you want etc & video it & send to me via text message 0414 942 408 Saxon our editing pro will collate them all, add music to make a short video to put on the groups page as 65 bin isolation outings for Cystic Fibrosis. This needs to happen in May as May is CF awareness month so we will need it all in by the 23rd May to have your clip included. Let’s have some fun & raise awareness !! Whose in ?!!!

02.01.2022 Repost from Upworthy...... You've probably never heard of her, but Jane Hinton was a medical researcher who made history twice once by becoming one of the very first black female veterinarians in the United States, and again by developing a method to culture bacteria that scientists are still using today. Before she became a Doctor of Veterinary Medicine in 1949, Hinton worked as an assistant to John Howard Mueller in Harvard University's Department of Bacteriology and Imm...unology (Hinton's father, William Augustus Hinton, was a bacteriologist and had earlier become the first black professor in the history of the university). Together, Hinton and Mueller developed what's now known as the Mueller-Hinton agar, which is a gelatinous substance used in petri dishes to help culture, or multiply, different organisms. Here's why the Mueller-Hinton agar was so revolutionary for medicine: At the time, diseases like meningitis were everywhere. Doctors had the antibiotics to cure these infections, but finding the correct medication depended on identifying the type of bacteria that was infecting people, hence the need for culturing. Not only that, but when antibiotic resistance started becoming widespread for the first time ever, doctors also needed a way to culture bacteria and check for resistance. At the time, there was no reliable agar that could allow the growth of a range of organisms, be easily reproduced in different laboratories, and would allow the easy penetration of antibiotics placed on its surface. The Mueller-Hinton agar changed all of that, and is today the world-wide standard for use in antibiotic testing.