Monday, May 17, 2010

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,


  1. Wow -- this is a fabulously well written letter. I hope you get lots and lots of donations!!!! And I hope your lungs come soon!!!

  2. you are an amazing writer. I always enjoy reading your posts.

    Praying for you,

  3. Simply marvelous, Piper. Simply marvelous.

  4. Hope you get your call soon, got mine in 07. Life has been amazing since!

    Chris Falco
    Sycamore, IL