Wednesday, July 8, 2015

Awareness and Hope

Just thought I would share the news story that the local news did about Orkambi here. They interviewed a CF doctor and a few CF patients including myself. I think he did a good job with the story, and we made sure to emphasize the fact that while Orkambi is a game changer, it is not a cure. I love having the opportunity to spread awareness!   Just click on the picture to watch the video. :)

Thursday, July 2, 2015

Orkambi... HOPE

"Aaron Stocks, who participated in a trial for Orkambi, said that's certainly the case for him. The 30-year-old Maryland man said the drug gave him a noticeable improvement in lung function and helped him to gain weight, which is difficult for many cystic fibrosis patients. He recalled going on his normal run not long after starting the drug, only to be surprised to the point of tears when he realized how much easier he could breathe and how much farther he could go."

This quote from an article about today's announcement about Orkambi fills me with so much hope! The hope is welling up inside of me and is getting dangerously close to overflowing. I understand that not everyone on Orkambi has seen these same results, but I can't help but hope that I will see similar results. Actually, I have hope that I might even see a one percent increase in my lung function. To me, that would be amazing! Any gain in lung function is a huge victory for me since I fight every single day for every percentage of lung function I have. My lungs are tired, and my body is tired. I can only get them so far without this extra help. This could be the boost my lungs need to help me live a longer, healthier life. That last sentence in the quote, the one that talks about being "surprised to the point of tears" is something that I want to feel. I can't even imagine what that feels like. I just want the opportunity to feel it.

While it's a huge deal for me that Orkambi was approved today, it is an even bigger deal for all of the children who are fighting cystic fibrosis. With new medications like this being approved, their future is so much brighter than mine was at their age. There is so much hope for them to be able to live with their beautifully high lung function for longer.

Is Orkambi a cure? No. But I believe it is a huge step in the right direction. A cure is coming. I can feel it!

Does that mean we can slow down on fundraising or raising awareness? Of course not! It means that I am going to be doing everything in my power to raise more money and more awareness than I already was! There is so much more work to do! We are getting so close, and we can't slow down now.

If you would like to read more about today's announcement, check out these two articles:
Washington Post
Boston Globe