I still believe the best is yet to come.... 2016 Great Strides Ambassador

And after all that we've been through

And after all we left in pieces 

I still believe our lives have just begun 

Cause now the past can be outrun

And I know you are the reason 

I still believe the best is yet to come

Has anyone ever told you "the best is yet to come"? Did you believe them? What was going on in your life when they said it?  I've always liked that phrase. I'm a fan of being optimistic and those words embodies positivity in every way. It says "even though things are great right now, they're still going to get better." The lyrics above are from a song by the band RED.

If I had to pick one song to describe the year 2015, it would be that one.

2015 was awesome. It seriously was. You can read about the first half of the year HERE. But to sum it up... I had the most amazing last semester including an internship, a executive board position in my sorority and a director position with ODU's Student Government Association.  I graduated with college with honors. I got a paid internship within a week in my field of study. I got the most adorable kitten in the world. And last, but certainly not least, I was able to start taking Orkambi, the first ever FDA approved medication to treat the underlying cause of cystic fibrosis for nearly 20,000 children and adults in America.

I wrote a blog about Orkambi when I first started treatment (read that one HERE), but per usual, I haven't written much since. Tomorrow will be six months since my first dose. People have asked how it's going and I have to be admit, I hesitant how I should answer. Don't get me wrong, I have definitely had positive results from this medication.... but I'm not going to lie and say that it's been some miracle cure-all.


Actually, to be honest, just a few weeks ago, I felt my stomach turn when one of my best friends asked me after I finished coughing, "why isn't your new medicine working? I thought it was suppose to be like a cure?"

Cystic fibrosis is hard to understand. These new medicines are hard to understand. Even the professionals don't totally get it. When it's predecessor, Kalydeco came out in 2012, people were ecstatic. The results that were unheard of in the CF community. When Orkambi was approved in 2015, even though it was well-known that it was a combination drug and treating a more complex mutation, I think a lot of people were still expecting the same results as Kalydeco.  To be quite frank, I think the success of Kalydeco tainted the public opinion of Orkambi. On some level, it was inevitable. The only somewhat relevant datapoint we had was Kalydeco, so there was no way to know what to expect, or not expect, with Orkambi.

The bottom line is that CF is a very complex disease with a lot of variability. Why? Let me break it down for you. About 4% of the CF population can take Kalydeco. In CF patients, there are 6 different classes of mutations based on where and how severe the cellular error is. The patients able to take Kalydeco have a class that only has ONE cellular defect; the salt channel on the cell membrane is closed. The solution? Open the channel and you have a "functioning" cell. That's why patients responded so positively and so rapidly. Problem is... those mutations are some of the "less severe" and most certainly less common. The majority of patients, about 50-60%, have a mutation called Delta F508. In this mutation, there's TWO cellular errors; the salt channel is closed and the salt does not move properly from the inside of the cell to the cell wall. Orkambi is actually two medications, one to open the channel (Kalydeco) and one to move the salt. Because there's two problem to fix... there's more room for error. That's why Orkambi is not as good as Kalydeco. Because it's treating a second problem.

So no, Orkambi has not cured my CF. And it hasn't miraculously given me back lung function. Honestly I haven't seen any lung function increase since starting it... By now you're probably thinking "what's so great about it then?" What's great is I have seen positive changes in my quality of life and my symptoms, even if those changes don't translate to hard number, they are real and they are significant.

The only way to explain it is that breathing with Orkambi is just easier. 

My mucus is thinner and moves more when I do my therapies. My entire life, coughing has been the most exhausting part of my day. My mucus was so thick that I could cough for several minutes straight and nothing happened. It was just stuck in my lungs. And let me tell you, coughing is exhausting. Every time you do, you're moving every muscle in your torso. I frequently pull muscles in my ribs, back and abs just from how aggressively I cough. I use to cough so violently that it woke me up in the middle of the night. Or how about the times that I cough so hard I actually break blood vessels inside my lungs and start coughing up blood? All of that has changed with Orkambi though. It's easier now. It's not as painful or as tiring to cough. I feel like I can breath deeper and in turn, I have more energy during the day. I also haven't been admitted to the hospital in over 9 months, which considering my average was 2-3 months, I'd say that's definitely an improvement.

The other great thing about Orkambi though? And I cannot stress this point enough.... it is just the first step. The better, or dare I say, best, medications are still coming. 

Vertex is already working on more combination drugs to treat cystic fibrosis the very same way that Orkambi does. They already know that Kalydeco works. What we need now is a second medication to be combined with it. Orkambi was the first combination they tried and it works, but that doesn't mean there isn't going to be a better combination. 

Ten years ago, I got my first cell phone. It was a LG Flip Phone. I could make phone calls, send text messages, take (horrible quality) photos and that was about it. Today, we have smart phones that can do literally anything. My iPhone, which isn't even the newest model, that does all that and gives me access to every piece of information ever posted on the world wide web. It keeps me connected to nearly 2,000 Facebook friends in a single click. It's a personal GPS,  can calculate algebraic equations and do real-time video conferencing with people on the other side of the globe. My point being... technology is always evolving and the first generation of anything "new" is only scratching the surface of its potential. 

Orkambi is the first generation of these new CF therapies and trust me, the best is yet to come. Take my friend Kenny for example. Just two years ago, Kenny's lung function was in the 30s and he was being evaluated for transplant. In December, he was in the 60s. That's a 100% net increase. What changed? Kenny was a part of the Vertex drug trials for VX661; the next round of combination therapies for CF patients. This is what I mean when I say the next generation of medications are going to be even better. I am so beyond happy for my dear friend and I cannot wait to see how others benefit from VX661. Even better, Orkambi is only for people with two copies of DF508, about 50% of patients. VX661 is going to be for them plus people with just one copy, which is an additional 30% of the total CF population. I wholeheartedly believe everyone with CF deserves the opportunity to benefit from these revolutionary new treatments and I cannot wait for the day where research is able to provide a safe, effective therapy for each and every CF mutation. 

That's why it more important that ever before to support cystic fibrosis research. We need to keep pursuing more effective, state-of-the-art medical therapies, and we need to ensure that everyone has equal opportunity and access to said therapies. Which brings me to the actual reason I started writing this blog in the first place...

I am please to announce that I am the 2016 Virginia Chapter, Great Strides Ambassador. 

It is truly an honor to have been asked by my dear friend Kimberly Johnson, Senior Development Director for the CF Foundation - Virginia Chapter to represent all those fighting cystic fibrosis in Virginia and I gladly accepted. So far, I've worked with the Foundation to write welcome letters for team leaders and registered walkers, create a short bio to be distributed by the 8 CF Centers in the State and personally welcomed new teams to Great Strides. And there's plenty more to come! 

Be on the lookout for more promotional material, my personal fundraising page and even a few speeches and special events promoting the CF Foundation, Great Strides and why you should get involved with this great cause! Thousands across Virginia (and the rest of the nation) are already taking steps towards a cure by participating in Great Strides. How many steps will it take to get there? I don't know, but I know that all those steps are a stampede, paving a path of hope for me and 30,000 others in America who fight every single day against this disease. 

I am so excited for the opportunity to represent the CF Foundation this spring as Virginia's Great Strides Ambassador and I look forward to all it has to offer. I hope you will join me because as I said, 2015 was truly awesome and set the bar high for 2016... but I still believe the best is yet to come.