I recently received another great email from president Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation. Below is part of his message:
"We have encouraging news to share about a potential new CF drug. Today, an FDA advisory committee, made up of independent medical experts and community representatives, voted 12 to 1 to recommend that the FDA approve the ivacaftor/lumacaftor combination therapy (Orkambi).
While the committee’s recommendation is an important part of the FDA’s review process, the decision is not binding. The FDA has said it will make its final decision by July 5, 2015.
Orkambi targets the underlying cause of the disease in people with two copies of the F508del mutation. Currently, the FDA is considering whether to approve the drug for people with CF ages 12 and older who have two copies of the F508del, representing nearly a third of all people with CF in the United States.
In clinical trials, Orkambi was shown to improve lung function in people with CF and significantly reduce the rate of pulmonary exacerbations, which can lead to frequent hospitalizations and worsening lung function. The drug was developed by Vertex Pharmaceuticals Inc. with significant financial and clinical support from the Foundation."
That's so great! Thank you everyone who cares about finding a cure for CF.
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Thank you!!!
Overall, I've felt pretty good. The humidity often plays a part in my daily coughing routine. Recently I started using essential oils in addition to my daily Pulmozyme and VEST treatments. For me, it some seem to help with some things, however, you should always talk to your doctor about it before using! I sometimes use/diffuse lemon, frankincense, peppermint and others.
I recently completed a bucket list item and passed a motorcycle riding class. I was one of two girls that passed the class and definitely the shortest in stature (all 4' 101/2" of me). It was challenging because of my shortness, plus it rained for hours!!! For breathing, it was sometimes hard to go from the classroom with A/C to outside and put a helmet on. (Side note: It's kinda gross when you have to cough and you have a full face helmet on...lol). At first they make you walk the bike around using your own strength. Doing that being short and on a hill was really hard for me! I was literally so physically exhausted when I got home you would have thought I just got done climbing a mountain!
Passing the class was a big deal to me even though it's a simple thing for others to do. It was a lot different than riding a dirt bike (which I have). The motorcycles are heavier and more CC's than my bike. Even the small size of my hands made it more challenging! I felt like I had arthritis in my fingers and hands for days after pulling in the clutch and break for so many hours. Thankfully, the instructors were fantastic (Thanks David and Tom).
I was reminded this past month how quickly life can change and how precious it is. I lost a friend, 42 years old, who died after complications from surgery (not CF related). Makes me want to get out a pen and paper, make a longer bucket list and actually continue to cross things off. Maybe that's what we should all try doing. Remember, each day is a gift and so is every breath...
Send a private email to Jen via the blog website (right column area): Jen's Breath of Life Blog