30 years ago...

My first grade teacher always used the phrase “patience is a virtue” she repeatedly said this to the class as a whole and the individuals who needed a good reminder. Even tho I may have been too young to really grasp the concept it’s something that stuck with me throughout my life. ⁣

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30 years ago cystic fibrosis made headline news when the CF gene was identified by Dr. Lap-Chee Tsui. This was a HUGE discovery and a very pivotal moment in my life. This breakthrough changed genetic research and led to so many new medical advancements across the board. This was the first glimmer of hope for my family that came at a time when we needed it most. This new discovery solidified our fight and fueled our fire to keep moving forward in hopes that a cure would be right around the corner. ⁣

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Fast forward to today... we are still very hopeful, we are still fighting, and we are still moving forward. I often whisper to myself “patience is a virtue” Some days my patience is tested, its not easy being patient, especially when you see first hand what this disease is capable of. I can’t help but yearn for that day we make headline news again but this time the headlines read “CURE FOUND”. 

There are amazing things happening right now because of that breakthrough discovery 30 years ago. Today we are closer to a cure than we ever have been before, and for the first time in a long time I am filled with more hope than ever. That hope is the virtue that will continue to fuel my fight as we patiently wait for that sought after cure. 

Breathe out love! Xo❤️

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Madonna!!

It is so great to see so many amazing people and celebrities support the Cystic Fibrosis Foundation with the #TakeABreathForCF campaign to raise funds and awareness for CF!! Of course there is only ONE celebrity that makes my world go round..... the ONE and ONLY Madonna. Madonna make my birthday one to remember and Take a Breath for CF! 

I sent Madonna this video back in 2015 when she did a question and answer on Instagram. 

https://instagram.com/p/BF7SMvJnAm7/

I had 15 sec or less to record this video and ask her anything....So much pressure!!!  So, naturally I asked her something I think is very important and near and dear to my heart. She didn't answer my question.... maybe because there were thousands of other videos to scroll through. Perhaps maybe she even skipped it because the answer is more than likely yes, or maybe because it's something most people don't even really think twice about since it usually comes with such ease. But if you really truly think about each and every breath you take, I promise you, you will treat each breath as a gift... and you will Love to Breathe®. 

May is Cystic Fibrosis Month and it just so happens to be my bday month....I can't believe I am 37, May really is A•MAY•ZING!! 

So for the rest of this month I challenge you to really think about every breath you take... What would your answer to my question be? I mean, I know it would probably be yes... but if you really think about it, I'm pretty sure it's more than just a yes or no question. So if you have a chance you also should #TakeABreathForCF and support the CF Foundation and of course as always... Breathe out Love! Xo❤️

Love To Breathe Award

Tonight I had the honor to present the Love To Breathe Award® to Sue Meihls, the pediatric CF nurse at Primary Children's Hospital. 

She is very deserving of this award, and is everything this award stands for and more. Sue is passionate about CF, she's out in the community making a difference, she is always raising awareness, and she is loved by so many in the CF community. Sue ultimately wants CF to stand for CURE FOUND!! 

Her tireless efforts give so much hope and comfort to so many families. She goes above and beyond every single day. She's magical really, she can complete tasks and get things done even before anyone knows they are tasks. 

I asked some of her peers, her patients and their families and her friends to describe her in one word these are the words that were used. Tenacious, Perfection, Friend, Compassionate, Empathetic, Reliable, Trust Worthy, Dedicated, Mother Bear, Loving, Hope, Devoted, Comforting, Hard Working, Passionate, INSANELYorganized, Sufficient, Thorough, Dedicated, Tan, Committed and 

Supercalifragilisticexpialidocious. 

Congratulations Sue, thank you for ALL that you do everyday! 

Breathe out Love! Xo❤️