Posts Tagged ‘video’
Please join us in our fight against cystic fibrosis.
This week has been landmark in the CF world. The drug VX-770 is showing very promising results in its phase three clinical trial. Patients are showing improved lung function…on average a 10 percent increase which is fantastic! This drug also reduces sweat chloride levels in CF patients which means that it is treating the underlying cause of CF. This is huge…very huge…we are closer than ever to an actual miracle pill…a cure.
VX-770 is designed to treat patients with a specific gene mutation…unfortunately a mutation that Julia doesn’t have. However, this drug is laying new ground for more miracle pills to be developed to treat different gene mutations. VX-809 is currently in development and would treat patients with the delta F508 mutation…a mutation that Julia does have and in fact most CF patients have this mutation.
Read the entire press release by clicking here.
These advancements toward a cure couldn’t be made with out the financial support of the Cystic Fibrosis Foundation. There has never been a better time to invest in a cure. We are so close…so close. This would be a true miracle for Julia and all those who are affected by this devastating disease. If you’d like to join Julia’s Warriors in our fight against cystic fibrosis, click on the image below. We have two great ways for you to get involved!
Click on warrior Julia to find out how you can help us in our fight against cystic fibrosis.
It's TOBI time!
Pseudomonas can really wear a girl down...
I’d like to share with you a song written by a man who lost his battle with cystic fibrosis and is sung by three CFers who are fighting the good fight. Enjoy! The first is the music video and the second is the making of the video.
I stumbled on this video on cfhusband.blogspot.com and I thought it was so clever. It reminded me of the Charlie and Lola cartoon. Julia enjoyed watching it!
I am so excited about sharing this video with you all. This is the video that Julia and I had the privilege of participating in for the Taste of Salt Lake fundraiser. Julia was such a good sport and was so cooperative. A big thanks to Laura Hadley at the Cystic Fibrosis Foundation for allowing us to be a part of such a special night!
So, here is a video of Julia demonstrating an at home clean out. It was filmed by my seven-year-old, Austin. Hope you enjoy catching a glimpse of what living with cystic fibrosis is like.
