#aworldwithoutCF

Instagram photos and videos

#aworldwithoutCF#cysticfibrosis#spoonie#chronicillness#aworldwithoutcf#endCF#65roses#NACFC2018#selfcare#selflove#thankyou#thehappynow#cflife#CFLife#CFAwareness#livingwithcf#cf#lifewithCF#diabetes#Antibiotics#curecf#mentalhealthawareness#healing#fightCF#transplantlife#beatCF#CFaware#CF#mydonormyhero#glumetza

Hashtags #aworldwithoutCF for Instagram

"Living with cystic fibrosis and depression and anxiety. Looking after your mental health is vital if you have a chronic illness. Talking to a therapist, journaling, and meditation can all help. In my experience, you have to experiment and find what works best for you." - Cassandra⠀



#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #mentalhealthawareness #anxiety #depression #selfcare #selflove #healing


2

We have a number of sponsorship opportunities available for businesses looking to increase their charitable giving.

Join Cystic Fibrosis Canada in creating a world without CF!
Let us know if you’d like to be a part of this SOLD OUT event!
Email us at theprincessballhamilton@cysticfibrosis.ca to become a sponsor TODAY :) #end CF #aworldwithoutCF #sponsorship #theprincessballhamilton #cysticfibrosiscanada #helpfindacure


0

"I’m a tough cookie so I’ve been taking it one day at a time." - Kristina ⠀



#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #raredisease #hospital #toughcookie


1

***IVF update*** I haven’t posted in ages about our IVF journey. Sorry to all of you that follow me for that very thing. It was mostly due to not a lot happening. But also because they last time I shared the journey it ended so badly I couldn’t share it again. It was too much. Anyway, last month we transferred our second and last embryo. We had been told the chances of it having Cystic Fibrosis were about 5%, we said ok, that’s good enough for us. We’ll transfer it and see what happens. It didn’t take. Sad that it didn’t end up being our baby, but I’d rather it just didn’t take than we went though what happened last time. We saw our Dr yesterday and he thinks doing another cycle isn’t the best option right now. It’s such a huge expense with all the PGD/PGS testing (about $25,000) and it takes quite a long time as the embryo’s get sent off for testing. He has proposed doing an IUI cycle instead. The 5 embryos we ended up (PGD and PGS) testing from the last cycle only had my CF genetic mutation, not Petes. So he thinks the odds are in our favour that if we conceived naturally the embryo would only be a carrier or unaffected (although so far the odds really have not been so good to us!) I’m feeling positive, we are extremely lucky to still have options and a bit of time. Our quest for a second child free from Cystic Fibrosis continues 🤞🏼🤞🏼🤞🏼#iuijourney #ivfjourney #aworldwithoutcf #cf


76

When it comes to rare disease and chronic illness, the role of the caregivers is essential, especially in the early stage of life. ⠀



#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness
#raredisease #cflife #livingwithcf #family #familytime #thehappynow #momanddad


1

Happy Sunday! Here is a cute throwback photo of our dear Tara! ⠀


#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #cflife #throwback


3

The 2019 Hamilton Princess Ball SOLD OUT in under 2 hours! Thank you to everyone that has purchased tickets. We can't wait to see you all on January 20th, 2019. #aworldwithoutCF #thankyou #endCF


0

« Living with CF and kids. » - Rebecca⠀

#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #motherandson #thehappynow


1

Last night we proudly supported the @cf_foundation and @cff_massri at the wonderful fundraising gala #uncorkthecure. This year‘s event honored Patrick and Martha Marshall, loving CF parents of the brave Kate. After her parents spoke, Kate took the stage and delivered the most touching speech. Through advancement of science, Kate’s dream is that no child should be forced to grow up as fast as she did and that the chains of imprisonment that is CF will forever be gone.



#curecf #CFmom #CFdad #CFparents #CFwarrior #CFwarriors #cysticfibrosis #65roses #CF #CFLife #CFAwareness #aworldwithoutCF #CFaware #beatCF #lifewithCF #fightCF


3

"Living with cystic fibrosis and CFRD and anxiety! I manage my sickness with speaking out loud, and actually helping other people who are dealing with same/similar reasons!" - Kelly Ann⠀



#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #diabetes #diabetesawarenessmonth #mentalhealthawareness #anxiety #selfcare #selflove


1

❓ARE YOU READY❓ARE YOU REGISTERED❓ 👸The Hamilton Princess Ball 2019 tickets go on sale TOMORROW, Saturday, November 10th at 12pm!!!!! Tickets are $60 each and THEY WILL SELL OUT.
Don’t delay! Be ready to get your fast fingers🖐🏻 out and grab your tickets to a wonderful enchanted afternoon on January 20th! 😬SO EXCITING!!! Visit www.snapd.com/princessballhamilton and register to save some time tomorrow!
#endCF #aworldwithoutCF #register #snapd #tickets #princessballhamilton #ticketlaunch #soexciting


0

A clip from our thank you to all the sponsors and volunteers and all the kind hearts who donate to make life better for those with @cfcanada Full video on our fb page! 🎥 by Damien Gillis #cfnetworks #aworldwithoutcf #cf #curefound


1

My day... 100g of carbs in 5 minutes and about the same amount 5 minutes later resulting in a hyper of 20mmol/L... Need to get all my diabetes sh*t back together 😂🤣
.
#diabetes
.
#freestylelibre #tresiba #glumetza
.
#Antibiotics #Transplantworks #transplantlife #mydonormyhero
.
#cysticfibrosis #fibrosekystique #2yearspostlungstransplant #aworldwithoutcf #chronicloveclub


0

So this happenned today... LO on my device means that my blood sugar was under 0,6mmol/L...🤔 I managed to survive with all the Halloween candies I had with me. I think I ate more than 100g of carbs in 5 minutes... I think the Glumetza pill is working. My insuline ratios are dropping as hell.!!!!!!!!!!!!!!!!!! .
#diabetes
.
#freestylelibre #tresiba #glumetza
.
#Antibiotics #Transplantworks #transplantlife #mydonormyhero
.
#cysticfibrosis #fibrosekystique #2yearspostlungstransplant #aworldwithoutcf #chronicloveclub


12

"5 things to give up right now: ⠀
⁃ Trying to please everyone ⠀
⁃ Fearing change ⠀
⁃ Living in the past ⠀
⁃ Negative self-talk ⠀
⁃ Overthinking” ⠀

📸 and caption from Skylar⠀


#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #mentalhealthawareness #selfcare #selflove #healing #cflife #livingwithcf


2

It's more that just a walk to me. 💜💜💜💜💜 #itsanhonour #volunteer #coordinator #since2014 #yourewelcome #aworldwithoutcf


0

A huge thank you @tdbank for being our Magic Wand Sponsor! Your support is very much appreciated. #endCF #aworldwithoutCF #thankyou #support


0

Do you have a place where you feel most comfortable, happy, relaxed or peaceful? ⠀


#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #mentalhealthawareness #selfcare #selflove #healing


2

"Living with cystic fibrosis and ARFID (avoidant restrictive food intake disorder). My ARFID has improved a lot as I've gotten older but I still don't like trying new things, I eat very small portions, and I can take a long time to finish a meal. As a CFer, this makes it harder to gain weight than it already is!" - Cassandra⠀



#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness #livingwithcf #cflife #mentalhealth #healthissues #invisibleillness


0

Gah! 🖐🏻5 more sleeps before tickets go on sale for this fantastic event in support of Cystic Fibrosis Canada!!!! ARE YOU REGISTERED? If not, Go to snapd.com to register so you’re READY! WE WILL SELL OUT. Ticket sales open at 12 noon Saturday November 10th, and are $60 each. Be there! 😊👸🤴 #endCF #aworldwithoutCF #tickets #ticketlaunch #theprincessballhamilton2019 #register #snapd #dontforget #getyourtickets


0

Thank you to all of our dedicated volunteers, our generous sponsors, and everyone else who helped make this night a tremendous success! The "Enchanted Forest of Hope" was definitely a night to remember. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀
#65RosesGala #aworldwithoutCF ⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Proudly presented by B2Gold✨🌸


7

Fancy with this crew to raise funds for @cfcanadawestern .
.
.
#65rosesgala #aworldwithoutcf #okcrushpad #withtownhall #friendshipgoals


9

Flu season is here! Have you got your flu shot yet? Check out Chelsea who was pictured while getting it! Help keep yourself and those around you safe and healthy by getting your flu shot today!⠀

#flushot #fluseason #coldseason #winter #canada #stayhealthy
#cysticfibrosis #aworldwithoutCF #spoonie #chronicillness


2

It’s a Saturday morning with heavy rain and we’re watching movie trailers! Here is a movie we can't wait to see: @fivefeetapartfilm features @colesprouse and is about a girl and guy with Cystic Fibrosis that fall in love while forced to keep a safe distance. It comes out in March, but we’re so excited! Check out the first trailer!👆


6

What do people mean when they say, “just listen.” When we listen, we learn.

“I am alive today because of patient advocacy” - David Lucchino, chairman of the board, #MassBIO

“Bring the clinical trial to the voice of the patient” - Nick Lunger, parent of Fragile X patient

These are the words that move us. These are the words that inspire us. Being #patientdriven encompasses everything that we do. Thank you for allowing us to listen and learn. We are motivated now more than ever before and we could not do this work without your voice! 🌹


2