I’m partnering with Novartis to share lessons I’ve learned from living with my condition on their Facebook page: on.fb.me/1rdzLA1. To learn how I cope, what inspires me and keeps me going, “like” their page and follow my posts. Would love to hear your dreams and what inspires you!
(I am being compensated by Novartis as part of this partnership. The opinions and content shared through this program are my own.) 🙂
Thank you all so much for sharing the New York Daily News article!! The stair climb at Citi Field was a great success — it was incredible to see over 200 participants for the first climb! That is all thanks to the hard work of the wonderful people at the Cystic Fibrosis Foundation Greater New York Chapter and their dedicated volunteers.
Thanks to events like the climb and the generous supporters who donate their time, money and energy to finding a cure for cystic fibrosis, we have made major strides in the fight against CF. The lifespan has doubled over the past 30 years and equally as important, the quality of life of patients has improved. Yesterday, the Cystic Fibrosis Foundation received $3.3 billion from selling drug royalties. (You can read the CFF’s release here and the NY Times article here.) The trailblazing efforts of the CF Foundation resulted in this remarkable return on smart investments in cystic fibrosis research.
That number is huge and exciting. But, this is not the time to take a backseat on fundraising or donating. On Sunday at Citi Field, I met a girl my age climbing for her best friend who passed away in June from cystic fibrosis. We are still losing too many, far too young to this disease.
That’s why I speak out. Being so public about a very personal battle is a constant struggle for me. There are days when I want to close all the doors I have opened and quietly fight this. But I do it because I am able. I can, so I should. I owe it to the many patients waiting for their second double lung transplant, to those who were never able to realize their biggest dreams, to the young families that have to learn what cystic fibrosis is and how to face it.
So, while I hope this news can be celebrated, I hope you all will continue to join me in supporting the innovative efforts of the Cystic Fibrosis Foundation.
I finally have a chance to sit down and write again thanks to Easter Break. It is really nice to come back to my family’s home and temporarily leave the stress of school work behind.
Everyone needs a break.
I feel for my friends in the workplace who no longer have this time off…Spring Breaks, Holiday Breaks and best of all, Summer. (Makes me want to stay in school forever!! Dont worry, Dad…I won’t!) 😀
But, as I was packing, I realized there is one stressful aspect of my life I can’t take a break from: cystic fibrosis.
The daily regimen (See video below) to keep my lungs healthy is all I have ever known. Waking up and doing a nebulizer and vest treatment is as much a part of my morning routine as brushing my teeth. Every single day of the past 21 years of my life I have done up to 2 hours of treatments to make breathing a little easier.
This is my friend IV (pronounced Ivy) He is a 2 1/2 year old CF fighter and the next picture is his daily routine. IV has to take pills with every single meal to make sure he is absorbing all the nutrients from his food, all because of the havoc cystic fibrosis wreaks on his pancreas. Some CF patients take up to 60 pills a day.
Trust me, I have tried to take some time off from cystic fibrosis. For the first time in my life, I became quite lackadaisical with my daily routine when I moved to NYC in the Fall. I landed myself in the hospital for 2 weeks. I learned my lesson.
That’s why this preventive care is so important. That’s why research is so important. That’s why people like you who support cystic fibrosis research are so important. Research is not only “adding tomorrows” for cystic fibrosis patients. It is adding quality to our todays. So maybe someday, IV and I can take a break and