**Blogger Challenge: Emily's Entourage**

You know how every so often you come across someone who is smart, kind, loving, beautiful, and 100% devoted to making a difference?

A few weeks ago one of my good friends and fellow CFers, Emily, contacted me with an idea and a vision. Apparently some of her close friends and family had recently participated in a stair climb for the Cystic Fibrosis Foundation, and (as so often happens when we climb to new heights together for a cause we believe in) they had left the event feeling inspired, energized, and ready to do more. And that "more" in their case came in the form of a video, spearheaded by Emily's brother, that was designed to make something happen for people with cystic fibrosis.

When I first spoke with Em I was impressed by her commitment (she and her friends had already filmed the video and were working on a website) and by her drive to make a something happen in the CF world. "Wow," I remember thinking to myself, "this girl is talented and eager to fundraise. Awesome." Before she even had two words out of her mouth I was plotting ways to leverage her connections to bring us one step closer to that cure.

But when I sat down to actually view her video -- with her still patiently waiting on the other line, no less -- I found myself actually left speechless. Far from simply asking for donations from her viewers, I realized, this girl was asking for participation. She was asking for each person who saw the video and felt connected to her message to donate what they could and then to pass it on. To share the vision. To advocate for themselves, for their children, for their siblings, for their friends, and for everyone else with cystic fibrosis. She was asking, in other words, for more than money -- what she wanted was a movement.

And so, in the spirit of Emily's vision and the power of her devoted "entourage", I am asking each of you to take her challenge.

Please everyone, take a moment to view this video (and have a box of tissues ready when you do so, because you'll need them!). Take a second to contemplate all the love and energy that is reflected back on you from the screen. Remember, if you can, that this is a video put together not by workers in an office or by someone hired to do it, but by a wonderful and hugely inspiring woman, graduate student, employee, daughter, sister, friend, and activist who actually needs this cure. Then think about what it's asking for -- a couple dollars, a couple seconds of your time, a couple words for you to spread the message to your friends that this is a cause that can't wait any longer -- and see if you can really find in your heart a good excuse not to make that small request happen.

Yeah, I couldn't find one either.

So with all respect, love, and faith in the unbelievable power of this community, I'm officially declaring this to be the latest and possibly greatest "Matter of Life and Breath Blogger Challenge: Emily's Entourage Edition." Here are your official rules for participation:

1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).
2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.
3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.
4) Comment back here with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!
5) Re-post these rules on your own page.

Drawing will be held on Dec. 16 (2 weeks from today!).

**As always, you do NOT need to link back to my blog on your site. However, only those whole leave a comment on this post will be entered into the drawing for the prize. Non-CFers and community members of all genders, ages, sizes, and disease status absolutely encouraged to participate.**

You Probably Think This Blog is About You

Today I received a package in the mail, and when I opened it up I found a few copies of American Way Magazine, the official magazine of American Airlines, for those of you who keep your feet on the ground most of the time. (Take it from me: it's a great magazine for those of us who like to walk around with our heads in the clouds!) American is also the amazing sponsor of the AA Celebrity Ski event benefiting the CFF. And I have to be honest here, I knew this was coming, but it was still a huge delight to open the glossy pages and see this article:

The Fight of Their Lives

Wowza, right?

Okay, I'm not gonna lie: it's always fun to see yourself in print. That part of it was great, and I'd be a fraud if I didn't admit that I went squealing around my apartment and basically called/texted/emailed/sent-out- (lung friendly) smoke-signals-to every single person I knew to make sure everyone was reading this article. That was, truth be told, the very first thing I did when the darn thing hit my greedy little hands.

After my vanity died down a little bit though, I decided to sit down and actually read the article. So I opened a copy and started to digest the words, and the meaning, behind the story. I read about two of my very best friends from Colorado, my former neighbors who also have this disease and who are living amazing lives every single day despite its nasty grip on their routines. I read about their parents, two wonderful people I have known my entire life who would move mountains for their three daughters, and who actually do so in small ways all the time. I read about the love that family shares for each other, which came pouring off the pages in every sentence. I read about my own story. I remembered. I marveled at the way the article paints me -- paints all of us -- as brave, when most of the time I feel somewhat overwhelmed and fragile. I was flattered that someone would see us in that way. I was amazed that the words rang true and that I could suddenly, at some level, recognize that spirit within myself.

But most of all, guys, I was humbled.

It is no secret whatsoever that I am this community's biggest fan. Without sounding like more of a sap than I already do on a daily basis, I really love all of y'all. You guys inspire me. You encourage me. You remind me of why I'm here and why I'm still fighting -- why I will work to kick this crazy little monster's butt until the day it kicks mine. You make me think. You make me wonder. You make me crazy. You make me cry. And you make me laugh. More than all of that, though, you make me super-duper-uper proud. Every day, every minute, and every breath.

Which brings me to the thing that I like best about this article (other than the fact that I'm wearing SUNO in the pictures!). What I like most is that this article isn't really about me, after all. It isn't even about Sam and Libby, although it probably should be. And it isn't about CF, because goodness knows I'm not gonna let that bugger steal any of the spotlight. Nope, it isn't about any one of those thing, or at least not in exclusivity. Because this article, guys, is all about us.

If there's one thing I've learned from all of you guys out there it's that it takes a village. And preferably in an ideal world, that village would be chock full of thinkers, lovers, fighters, dreamers, learners, teachers, motivators, storytellers, writers, players, and doers. You guys embody that village for me, and that, without exaggeration, is the one and only reason I am still around to be featured in this story (or that I have the breath to shriek at its arrival!). I am alive quite literally because of the kindness of the beautiful souls who gave me these lungs, but it is equally because of my own village of friends, family, doctors, CFers, role models, confidants, CFF staff and volunteers, sponsors like American, and readers that I am even typing these words. Or, to put it another way, it's because of you.

What the article really gets at, from my perspective, is that people with CF are fighters. That we overcome challenges, and that more often than not we do it with a smile on our faces. It's about how we live each day of our lives with this disease, knowing it's there, understanding what it means, but still doing some pretty kick butt things while we're here. And that isn't, of course, a trait unique to CFers -- though it does seem pretty much rampant in the CF community so far as I can see. It's really about how any group can rally together and realize its strengths and its challenges through the individual and collective actions of its members. It's about how you, me, and all of us are finding new ways to live better even when things can seem a little crazy, overwhelming, or just downright hard. And, of course, it's about life. About living it, about embracing it, and about sharing it.

I think my favorite moment in reading the article was coming across the quote toward the end, where I said in a fit of inspiration that "I didn't want anyone using this disease as an excuse not to live life." I still believe that statement wholeheartedly, but I've also come to realize that the person I was talking to when I said was myself. And the community I have to thank for showing me that there is another, better way, is composed, in all honesty, of all of you. There is a better way to live with this disease, and more often than not, that way is simply to find your village(s) and to embrace them with everything you've got -- and then, if you're truly one of the lucky (and brave) ones, to learn to be yourself within that larger whole.

With love, light, and eternal gratitude to the village that sustains me always,

xoxo,
Piper

Top (CF) Chef

Just about everyone who knows me will vouch for three major things about my personality:

1) I rarely, if ever, cook anything edible other than, say, the occasional bowl of cereal or, when I'm feeling super gourmet, some sort of random stir-fry/5th-grade-science-fair experiment hybrid involving pretty much every single ingredient that happens to be in my kitchen at that moment;

2) That the aforementioned lack of culinary skills does not in any way, shape, or form dissuade me from religiously watching just about every cooking show known to man, often DVRing the episodes and re-watching them later (as if the results of the show might have changed?), plate of take-out Chinese food in hand; and

3) That I have been, at times, known to be just a little, tiny, teensy bit competitive . . . although this one is somewhat up for debate. (And I WILL win that debate, I promise.)

All of which combined led me to literally squeal with excitement when I recently received an email from our good friends over at Abbott Pharmaceuticals. Turns out that the makers of Creon (you know, the drug that allows so many of us to eat all that yummy food in the first place) are sponsoring a new program called CFChef. And in my opinion, not a moment too soon.

CFChef is designed to help people with CF meet the intense and sometimes challenging dietary requirements of living with this disease. According to Abbott, the program (which can be found at www.Chef4CF.com) is there to serve both as an educational resource for patients and families as well as a sounding board for the sharing of information and recipes. Awesome.

So where's the fun part?

Turns out CFChef is celebrating its new launch by hosting a CF recipes contest. Now I want you all to close your eyes. Imagine your favorite Top Chef/Iron Chef/Food Network Star. Imagine s/he was cooking a meal for a CF audience and needed your help. You have 30 minutes and a mystery basket filled with dried pasta, brazil nuts, gas-station beef jerky, and ScandiShake powder (chocolate OR vanilla, just because I'm feeling generous). Your time starts...NOW!

Okay, maybe not.

But the contest DOES start now, and the rules are relatively simple. Just go to www.Chef4CF.com and enter your favorite CF recipe before Sept. 28, 2011. The top four winning recipes will be selected by a panel of experts including:

-Suzanne Michel, CF dietitian
-Boomer Esiason, Former NFL Quarterback, TV Personality, and CF Dad
-Michael Symon, Food Network "Iron Chef" (ohmigod, ohmigod, ohmigod!)
-Ali Christensen, CF Patient and "America's Got Talent" Contestant (Not to mention all-around sweetheart, as I had the honor of meeting her and her equally talented sister this year at the CFF's Volunteer Leadership Conference)

Tell me you're not super excited already. Go ahead, try and say it with a straight face.

Personally, I'm not much of a chef (and my recipe for "Piper's Special Stir-Fry Surprise" is just waaay too top secret to leak out onto the internet), but you can bet that I'll be encouraging my friends and family to enter! I'm also super excited to see (and to try!) some of the recipes that I know all my brilliant, beautiful Breathheads are going to submit. And if sharing and helping out the CF community while gaining personal glory isn't enough motivation for you, ask yourself when else in your life you're likely to have a chance to submit a recipe to a healthcare professional, a sport's star, a singer, AND AN IRON CHEF all at the same time? Yeah, that's what I thought.

Seriously though guys, this is an awesome chance to help out your fellow CFers, strut your stuff, AND have some fun in a program sponsored by one of the CFF's major corporate partners. What more could you honestly ask for?

So here's to community, cooking, creativity, calories, and, above all, to curing CF. Happy cooking, y'all!

The Challenge of a LIFETIME

Some things in life just don't come along often.

For example, it is extremely rare for me to start off a thought, sentence, or blog post with the sentiment, "One of the reasons that I'm happy I have CF is . . ." That's not to say that there aren't certain elements of having this disease -- and sharing this experience -- that I feel grateful for, but I am gonna go ahead and admit that I am not, in any real sense of the word, all that grateful to have been born with a fatal genetic disease. But, like any rule, there are exceptions, and this is one of them.

One of the reasons that I am happy I have CF is, I get to meet some awesome, incredible, inspiring, amazing, and downright fabulous people. People, for example, like all of you.

Or people like Mike Freemantle, whom I had the total honor of meeting a couple of weeks ago. And though Mike doesn't have cystic fibrosis himself, I still have to give credit where credit is due to CF for this meeting, because Mike is the kind of guy who . . . well, let's just say that Mike is a man of extreme energy. It's the kind of energy that leads people to push themselves, to challenge limitations, and to go beyond their own experience. In short, it's the kind of energy that connects everyone who has ever pressed against the outer realm of the extraordinary -- whether by illness or by choice or by anything in between.

Oh, yeah, and it's also the kind of energy that might lead someone to look at an ordinary road bike and think, "Hey, I think I'll hop on that sucker and take a leisurely 21 day coast-to-coast tour through 13 different states. And what the heck, maybe I'll raise about $50,000 for the Greater NY Chapter of the Cystic Fibrosis Foundation while I'm at it in honor of my friend (and fellow amazing rockstar) John. You know, just for kicks."

Right.

All of which leads us to yet another one of those amazing events that just flat-out doesn't come along often enough. Because this morning at the ridiculous hour of 6 AM, Mike and many of his supporters stood in the even more ridiculous sudden rain shower that swept across Times Square getting ready to launch what must have initially seemed to many people like the most ridiculous thing of all. One man, one bike, one big RV with the Great Strides/CFF logo proudly displayed, and more than a thousand miles between Mike and his final destination. But anyone who knows CF knows that the seemingly impossible is sometimes the most important, non-ridiculous goal of all. And anyone who knows Mike knows that the same is true about him. Because believe it or not he's done it before, and now he's decided to do it again.

Only this time, it's for all of us.

Below are a few pictures of the magic behind the madness (and the man behind the magic). Please, please, please check them out, then go to www.freematour.com to join and support Mike on his cross-country bike ride for a cure. He'll be keeping track of his experiences, his route, his pictures (the man has a camera strapped to his handlebars, people!) and, of course, his fundraising.

Because things like this just don't come along often -- and when they do we should all be so lucky as to have the chance to go along for the ride.

Only 13 states -- because he's an underachiever

Flier used to raise awareness of the cause

The one and only FREEMATOUR BUS in Times Square

Gosh, that's a handsome . . . logo. Um, yeah. The logo steals the show.

1 Bike, 1 Bus, 1 Rainy Horizon

"What, it's so wet that even Times Square is completely empty? Whatever. I've seen worse."

Start Your Engines

One small pedal push for Mike. One awesome push for CF awareness

Mike, you've got the wind of 30,000 beautiful people at your back, dude. Best of luck, safe travels, and, above all, thank you. For the chance -- and the challenge -- of a lifetime.

An Open Letter in Support of a Cure

Dear Would-Be Donors, Volunteers, New Friends, and Supporters:

I am writing you today to let you know about an issue that is very close to my heart. In fact, it's directly over, next to, and surrounding my heart: in my lungs. And it's also in the lungs of many of my friends, in the lungs of young children, in the lungs of approx. 30,000 people in the United States alone. That's right, today I am writing you to let you know about cystic fibrosis (CF), a deadly disease that I and many other amazing, wonderful, and inspiring people live with everyday. It's a disease that directly affects the daily lives of so many, and I write on behalf of every single one of those remarkable individuals to ask for your help.

We need a cure.

When you have a genetic disease, science means everything. The Cystic Fibrosis Foundation (CFF) partners with drug companies and other groups to fund research that has led to major developments in the treatment of CF. In fact, since I was born in 1981 the median life expectancy for a person with CF has risen from only to 18 to slightly over 37 years. Much of this is due to the new drugs that have reached the market during that time period, none of which would have been developed without the generous support of donors. To say this is amazing progress for a genetic disease is a huge understatement -- especially when you consider that alongside the increase in life expectancy has also come a dramatic shift in the quality of life for most people with CF. There are now adult CFers holding down jobs, raising families, and giving back in the same way that so many have given to us through the years. And we are, all of us, so grateful for that opportunity.

But let me tell you why it's not enough. The simple fact is that while there have been amazing improvements in CF care since the early 80s, the focus of that care is still on treating the symptoms of the disease, rather than the underlying defect. We have drugs that help thin and hydrate the sticky, dry mucus that collects and pools in our lungs; drugs that help us compensate for our ineffective pancreases by feeding our bodies synthetic enzymes to digest food; we have drugs that reduce inflammation in the airways and allow us to take deeper, fuller breaths; and we have drugs that attack the many different strains of bacteria that inevitably find their way into our diseased lungs, causing recurrent infections that in turn lead to irreversible scarring; and, for a lucky few, we have the final option of transplant -- trading in our CF lungs for the lungs of a generous stranger in the hopes of increasing the time we have to savor this life.

Unfortunately, few of these amazing, life-enhancing drugs come without consequence. Overuse of steroids to treat inflammation can lead to osteoporosis, diabetes, and adrenal disease. Pancreatic enzymes can cause scarring to the digestive track and lead to further issues down the road. Antibiotics used to treat infections often become ineffective over the years, forcing the doctors to resort to increasingly strong drugs that can themselves cause kidney failure, hearing loss, joint pain, nausea, or allergic reactions. Eventually, the infections often progress to the point where antibiotic treatment is no longer enough, and transplant becomes the only option. While this is a remarkable second chance for many CFers, it comes with a lifetime guarantee of immuno-suppression as well as many common secondary conditions such as high blood pressure, diabetes, osteoporosis, and an increased risk of certain cancers.

But you may have heard something about CF in the news lately -- say in a recent article published in The New Yorker. And if you did, you might have learned that the CFF is now helping to fund clinical trials for several drugs aimed at treating the actual genetic defect that causes cystic fibrosis. These drugs have the potential to change the entire approach to CF treatment, allowing perhaps for less use of the symptom-treating drugs that often lead to other, secondary ailments, and focusing instead on eliminating those issues at their source. These drugs have shown amazing promise in clinical trials so far and are currently in the late stages of testing before the final push to market.

And that, my friends, is where you come in.

It costs close to $800 million to bring a single drug to market, from research and development through testing and FDA approval. Because of this, it is ONLY through the support of people like yourselves that any of these drugs ever reaches the CF patient population. We are so close to potentially saving thousands of lives with these new therapies, but we simply cannot do it without your help. And, despite the seemingly astronomical sum required to make a difference, let me assure you that it's the little donations that add up to the bulk of this life-changing number. That change you found in your pocket when you were getting ready to do the laundry, the amount you would spend on your daily Starbucks latte, the cost of a night at the movies (or even the popcorn!) can be a miracle for all the many people whose every breath still depends on a cure.

May is National Cystic Fibrosis month and, across the country, people will be walking to support the CFF. Please add your name to the ever-growing list of amazing people behind this cause, whether it be through a gift of your time, your money, or even just a pledge to pass on the message of this disease to ten new people.

You can donate to my own walk by clicking this link and following the simple instructions.

30,000 people (and their 60,000 lungs) will thank you for it!

xoxox beautiful people,
Piper

Getting CF Off of Your Chest (And into Their Minds)

I am happy to report that I have now, officially, been bare-chested* for over 24 hours! That's over 1 full day of glorious, comfortable, unrestricted freedom. All I can say is: ahhhhhhh!

*By which I of course mean that my port is no longer accessed. Obviously.

And speaking of chests, there's recently been a lot of, um, "talk" about that very subject on Facebook, as I'm sure more than a few of you have noticed. Or, more specifically, there's been a lot of talk around that subject, since very few people have actually come out and posted the reason behind their constant color-coded status updates. But as word got out and the colors spread like wildfire, it seems a good number of people somehow managed to get the memo about the ultimate purpose behind the madness: breast cancer awareness. A very noble cause, for sure.

As a CFer (and also as a concerned human being), I'm always interested in awareness campaigns, particularly health-related ones. What makes an awareness initiative successful? What tactics get people's attention without just annoying them or interrupting their day? (Sidenote to the guys outside the Whole Foods on my block: I appreciate what you're doing and totally admire your dedication for standing around in the 20-degree weather all to get a few signatures on your petition. I do not, however, feel that accosting people in the freezing cold while they attempt to juggle grocery items, purses, and, in some cases, a portable O2 tank is the best approach. Sorry.) How do you spread enough information to actually raise awareness while keeping it all concise? Extra bonus points for any awareness spiel that I can listen to in its entirety without wanting to fall asleep and/or go into my kitchen for a snack.

Anyway, because I was interested (and because I have Facebook and couldn't avoid it), I have to admit that I sat up and took notice a little bit during this most recent breast cancer awareness campaign. And while I didn't directly participate -- I have friends on FB that just don't need to know my bra color, thanks -- a lot of people I love and respect did. Kudos to them. And a lot of other people I know and respect had some pretty strong reactions to it, as well. Here is a brief sampling of some of the comments I heard/read/stumbled upon throughout the week:

• A color by itself doesn't really raise awareness of anything. Nor does drawing attention to your boobs. If you want to support breast cancer awareness, do a walk or donate money or volunteer for the cause. Stop taking the lazy way out just to make yourself feel like you're doing something.
• This campaign was more about flirting than about breast cancer. We get it, girls, you have breasts. Congratulations. Thirteen-year-old boys everywhere are logging into FB in record numbers, I'm sure.
• This campaign was an awesome way to get the ball rolling. Sure, a color doesn't mean much when taken alone, but neither does a stretchy yellow bracelet. The point is to get people to ask about the status update, and by extension to talk/think/do something about breast cancer.
  
• Any breast cancer awareness campaign that makes it onto TV news stations is alright with me, even if the original idea wasn't really my thing. Anything is better than nothing, after all.
  
• And this really interesting personal-blog post by my cyster, Talana, (which is actually a CFer's reaction to a cancer patient's reaction to the campaign, if that makes any sense at all).

I tend to fall into the "anything is better than nothing" camp on this particular issue. As long as an awareness campaign isn't hurting anyone, then I really don't think it has to be perfect to still be pretty darn good. But ultimately, I think the best awareness grows out of personal experience: when people who actually have a disease are willing to speak up about it, or wear our chemo hair/scars/oxygen tubing in public, or even just be honest when people ask what's wrong or why we're coughing (because let's be honest: we don't really "just have asthma," no matter how convenient it is to just say that sometimes).

I'm not saying we all have to be in your face CF super-promoters 100% of the time, obviously. And I'm definitely not saying we should all be out on freezing street corners chasing after tired grocery shoppers. In fact, I guess all I'm really saying is that we're gonna cough anyway, so we might as well spend the 30 seconds it takes to tell people what's up. And if they don't want to listen, well, we could always try flashing custom-made bras with www.cff.org written across the chest. You know, just to get people talking.