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#CFawareness

MOST RECENT

Do you believe in coincidences?
Nearly three years ago to the day, I met a photographer from New York City through my massage clinic. She was holidaying in Brisbane and I was soon to visit New York. We traded tips and exchanged details and planned to meet again on the other side of the world.
At the time, my world was being shaken up by the difference Orkambi was making to me. To be able to travel to NYC in itself was unbelievable and I asked Maria to capture my wonder, awe and amazement through some photos in her incredible city. After a day shooting together, we called each other friends along with both our husbands who shared a love of cycling.
Maria followed my journey through social media and the occasional text. About 18 months ago she wrote asking whether I would be interested in creating a short documentary with her about my experience with Orkambi, particularly focusing on how value it had added to my life in ways others struggle to comprehend. The little things that are actually the huge things in my every day.
When an award winning documentary maker and photographer reaches out to ask something like that, let me tell you you don't think twice. It was wayyyy out of my comfort zone but what an opportunity, not only for me but to raise awareness for CF.
It always amazes and humbles me when people CHOOSE to take an interest in CF and the challenges we face as a community. People who genuinely want to make a difference because they can. Because they see us. Not because they have any obligation or personal affiliation compelling them to do so. Without them, our struggle would be so much harder.
Last week Maria and her husband arrived in Brisbane to start telling the story of my life with CF and my little magic pills. It was challenging, full, busy but most of all so much fun. There we plenty of laughs and a few tears.
Speaking to camera is something that I have always made me totally uncomfortable – room full of real people? Sure! Speaking to a camera? Cue freak out. But to me this was so much more important that being comfortable, this was a chance to share a story that isn’t just mine but represents so many others. {cont. in comments}

Some days the memories still knock the wind out of me🍃


Its a brisk fall day and the leaves on the trees move slightly and relaxed in the wind. Unlike the leaves, a different story plays out for 9th grader Katie who is sprinting for her life as she races towards the finish....I will always remember this day because of how I felt running. It was so easy. My lungs took in such beautiful,fresh, deep breaths. That day I came in the top 10 right behind my friends Alexis and Ellie and ran the fastest I had and ever would on this course. 18:29 was the time I saw on the clock for the 3mile race. I was astonished by the time and to make this day even better my XC team and I won our county championship. I always love day dreaming of past memories because they always take me back to a time when things were a little simpler and when running felt so free.... (man in green on the left is my father running after me haha)
#running #xc #distancerunning #countychamps #northrockland #redraiders #ladyraiders #reminiscing #throwback #CF #cysticfibrosis #deepbreaths #curecf #cfawareness #65roses #cyster #kates_race_to_breathe

My beloved big brother. I miss you as much as I ever did. Happy birthday, Michael. ❤️ #cfawareness #curecf

Went for a hikey this morning but also new blog post up, catching up from my transplant clinic visit two months ago in Minneapolis . Link in bio ⬆️💜♻️
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#lungstoryshort #cysticfibrosis #cfawareness #fucf #doublelungtransplant #posttransplant #recycleyourself #hiking #optoutside #colorado #blogpost #blog

Did you know AffloVest does not require an electrical outlet for treatments? So you can head to the beach just like this happy AffloVest user! Tag us using #AffloVest and we’ll share your photos!
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#CysticFibrosis #CF #CFLife #CFAwareness #AffloVest #Beach #CFWarrior #COPD #Bronchiectasis #CPT#ChestPhysicalTherapy #CureCF
#Vest #VestTherapy#Treatments #TreatmentTime #CfProbs #CfResearch #Chronic #ChronicDisease #Fighter #CelebrateLife

Thank you to everyone who has signed the petition so far! 10,000 signatures in under 24 hours really deserves some media attention! It’s amazing to know that so many people are behind us 💜 Please keep sharing and signing (link in bio)
We will not give up on our children!
#cysticfibrosis #orkambi #cfawareness #petition

For people with #CF, a team is more than just teammates. It's family, friends, classmates, doctors, and anyone else who joins the fight against #CysticFibrosis 🌎. Our #CFFighter of the week is Charlie Fisher. While only being 7.5, Charlie recognizes the #team helping him persevere. His mom, Beth, tells us that he loves going to his appointments and seeing his favorite, Dr. Keith 👨‍⚕️! Children like Charlie are the reason @team_boomer_usa exists! Want to join the team and the fight against CF? When you donate to the Boomer Esiason Foundation, you help people like Charlie receive scholarships, transplant grants, and much more. Link in bio.
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#cysticfibrosis #cf #boomeresiasonfoundation #teamboomer #curecysticfibrosis #cffighters #cfirl #cfawareness  #lifespan #cfstruggles #health #strength #motivation #CFfighter

So one year ago I started my training planned to do my PT and try help other CFs with excercise. Since then things had changed college cancelled the course I got busy then ill which stopped me training for about 4 months.

I re-acquired about college today for PT and I can start back at training next week so be prepared to see the hairy chest back out 😂. So things may get held up but don't give up. (My 6 month progress pic from last year)
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Blog: www.fullyd.me <-- link in my bio
#cfawareness #throwbackthursday #cf #cysticfibrosis #cysticfibrosisawareness #health #fitness #65roses #sixtyfiveroses #illness #fight #excercise #progress #lifestyle #life #fullyd

Mallory is praying the ENT does not see her under her “blankie of invisibility”⚡️💫 Sadly it did not work...
Mallory’s sinuses are still crappy one month after her sinus surgery😏🤦🏻‍♀️. Sinuses are filled back up with green gunk😫. I really hate CF🤬. #fucf #cfsinusessuck😩 #mallorys65roses #justbreathe #cfawareness #damncf #cfneedsacurenow

GORGEOUS // They say babies are the greatest time wasters. It’s true that I could stare at you all day, but it’s not a waste of time. My goal is to spend less time on the real time wasters and more time doing everything and nothing with my loves 💜

REAL SUPER HEROES WEAR SMILES // You are one happy baby! Which in turn spreads happiness to all around you. I hope this photo spreads your smile across the world, especially to your fellow warriors! “A smile doesn’t necessarily mean you are happy, it means you are strong.” 💜

TICKETS NOW AVAILABLE to the 14th Annual Summit Foundation for Cystic Fibrosis Gala on April 27, 2018. Come join us while we raise funds, raise awareness and just celebrate being alive and making a difference.
TICKETS: www.sfcf.ca

#yyc #cysticfibrosis #fundraiser #gala #cfawareness #research
@calgaryhealthtrust @thecostumeshoppe @globalcalgary @hyattcalgary

BREAKFAST OF TINY CHAMPIONS// Your own special “Berroca” cocktail of vitABDECK vitamins, Creon and apple puree. That one that turns all your bibs orange. Wash it all down with a breastmilk chaser. It’s a tiny amount compared to the breakfast of the big cf warriors but still a lot for a little love 💜

#Repost @cf_foundation with @get_repost shout out the UCSD clinic team! ・・・
Over the next few weeks, we’ll be sharing stories we heard from clinicians at #NACFC about a time when a person with #cysticfibrosis changed the way they practice or perceived #CFcare. Jessica Goggin, an RN for more than 20 years and a nurse manager for the adult CF program at UCSD Medical Center, opens up about that moment for her.
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“One patient shared with me, ‘The first-time you mentioned the word transplant, I don’t remember a word you said. All I remember is that the day I knew would come all my life was here -- and I was shocked that it came so suddenly.’ Another patient told me, ‘The first time you mentioned advance directive, all I heard was “You are dying.”’
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“It never occurred to me that this may be the first time these patients heard the word ‘transplant’ or ‘advance directive.’ This experience changed the way we speak about goals of care and transplant within the team and in clinic. Now the first time someone hears the word ‘transplant’ or ‘goals of care’ will be in the annual visit. Conversations that occur over years and according to individual need.”
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#CFawareness #65roses #transplant #lungtransplant #doublelungtransplant

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