Saturday, October 8, 2011

Ask Not What a Cure Can Do For You

I like to come on here every once and a while and brag about my family. This is, of course, partly because my entire family is pretty much awesome, and I love them.

The other reason I like to brag, though, is a little more selfish. You see, I happen to have a family that is 100% committed to combating, controlling, and yes, to eventually curing cystic fibrosis. Not only do these wonderful folks donate money any time they can to this cause and support me through thick and thin with the disease, but they also serve as volunteers with the CFF, they get out and walk to raise awareness, they spread hope and prayers and love to just about everyone in their communities (but also to families dealing with CF), they serve on boards and chair committees, and perhaps most importantly: they continue to ask.

My father likes to say that "making the ask" is the most important part of curing this disease. Recently I heard him speak at the CFF's Greater New York Chapter Bi-Annual Scientific Update. This was a wonderful event put on by the amazing staff at the GNY Chapter to help answer questions about the sometimes crazy weird science that accompanies this disease we all consider to be a part of daily life. The program featured CFF Vice-President for Clinical Affairs, Dr. Bruce Marshall, and Emily Schaller (founder of the awesome Rock CF Foundation), both of whom gave testimony to the amazing new class of drugs out there that will treat the underlying defect of cystic fibrosis -- that amazing triple-punch combo of Ataluran (nonsense mutations), VX-770 (currently for G551D, though may have wider use), and VX-809 (DF508); and the new drugs like VX-661 that are just entering development.

These are awesome new drugs guys, and they work. We know that. We know that they do at least some of what they are supposed to do. We know that we are closer than ever to figuring how they work best, who they work for, and what might work better down the line. To that end, the CFF continues to do studies, pledge money, and move forward in solving this equation that we worked so hard to figure out in the first place.

I say "we" there because this really has been a collective effort. 56 years ago when a group of CF parents and loved ones came together to say they'd had enough of their children's fatal disease being ignored or unfunded, one might have said that it was them against the world. As recently as the early 1980s, the CFF had a working budget of about $1 million dollars to wipe out one of the most deadly and most common genetic illnesses in the US. The numbers have grown quite a bit since then (and, not coincidentally, so has the science and the treatments and the life expectancy), but one thing hasn't changed at all: this is still a community-based effort -- OUR effort, guys -- that relies 100% on donor funding.

So WE are super close, but WE'RE not really there yet. There's a lot of stuff to be done, including studies that take a lot of money and a lot of help. And that guys, is where WE get to come in again. Because something my dad said in his speech the other night really stuck with me, and I think it's worth sharing here:

"We are no longer looking to invent the lightbulb or to find the light at the end of the tunnel. We've done that. All we need now is money to fuel our lamp. And we have to realize that in our future either one of two things is going to happen:

Either we will have to end each day knowing that someone out there is saying goodnight and goodbye to a child, a sibling, a loved one, or a friend with this disease;

Or together, WE can say goodnight, goodbye, and GOOD RIDDANCE to cystic fibrosis."

I think right then was the moment I decided to stop asking what a cure could do for me. Instead, to paraphrase our late President John F. Kennedy, I think it's time we start seriously asking ourselves what WE can do for a cure. And hey, while you're asking yourself, why not ask a couple of friends as well? And why not ask them to ask a couple of others? Because I'm pretty sure most of you guys out there have friends and loved ones, and I'm pretty sure most of them do too. And I'm sure you get where I'm going with this, because while no gift is ever too small to accept, it is equally true that no gift should ever be big enough to make us stop asking until this disease is cured.

So what I'm asking you guys to do is this:

Get involved in your own health and your own cure. Different people are going to do this in different ways, obviously, but I think the main message is that we should not wait to see what other people, other groups, and other treatments are going to do for us. WE need to be the ones out there spreading this awareness. WE need to take the information about our disease to the next level if it's not good enough yet (and here's a hint, it's not). WE need to seek out and participate in these studies as much as possible. WE need to keep on it and get out there. WE need to give whatever we can in the form of time, energy, money, space, whatever to get this job done. There's no one specific action that I'm asking you guys to take here. I know circumstances vary. But I am asking -- pleading, beseeching, begging -- that each and every one of you take a second (or maybe even a blog?) and try to figure out a way that you personally can be more involved in your own community and in the fight(s) for the cause(s) you believe in.

Because WE as CFers, as people, as a world, simply cannot wait for the cures that will save us.

WE have to be them.


  1. Nicely put! I hold fundraisers throughout the year for my great strides team. My daughter (no CF) even got her friends to design CF Awareness tees that they wear to school and to fun activities. Every little bit of awareness helps. We are also actively seeking out new care information and studies for my son with the disease. Thanks for the reminder that "enough is NEVER enough!"

  2. Excellent Blog post Piper! I have to admit I'm guilty of not doing enough to help raise funds for the CFF. I will rise to your challenge and ask myself what I can do to help! Thank you for a very compelling and logical challenge. :) ~Juliet

  3. Dangit Piper, you hit the nail on the head!! Great post cyster :) One thing I'll add, is that as a CFer, I also focus on "being my own cure". Meaning, I do everything I can to be the best version of myself each and everyday. Know what I mean?