Hello Friends,

As many of you may remember from our conversations or from this letter last year, my daughter, Ella, has Cystic Fibrosis. Each year the Cystic Fibrosis Foundation holds over 600 events nationwide all under the name Great Strides. This year our theme is to “Blow Away Cystic Fibrosis.”

Cystic Fibrosis (CF) is a genetic, life-threatening, progressive disease that attacks the respiratory and digestive systems of people with the disease. There are over 70,000 people in the world with CF, and one in every 30 people in the U.S. is a carrier of the defective gene and are capable of passing it on. This gene causes cells in the lungs, pancreas and intestines to have a thick, sticky mucous that not only clogs these organs on its own, but is ripe for growing bacteria and creating a cycle of infection and inflammation damaging each organ beyond repair.

In the past year Ella, now 7 years old and halfway through first grade, has seen what can happen to a child with this kind of organ damage. Our dear friend Connor, who was only 7 years old, lost his battle with CF last June. His lungs had just become so clogged that his body could not function any more and finally succumbed to this awful disease.

Ella, who is a fighter in every sense of the word, has also had her share Cystic Fibrosis challenges this year. She has had two nasal surgeries to remove polyps that were quite literally blocking any airflow into her nose. She has also been on antibiotics to fight of CF-specific bacteria that love to set up shop in CF lungs. And she, as usual, has had more trips to the doctor, throat swabs and blood draws that we care to count. All of this to stay a step ahead of Cystic Fibrosis…

Here are a few numbers that represent Ella’s fight:

• 5:45 ~ Time Ella gets up in the morning, in order to do treatments, eat breakfast and make it to school by 8:25

• 2 ~ Hours of breathing treatments each day – inhalers, nebulizers and her vest (when she’s sick, it’s 3 hours)

• 3 ~ Times Ella must shoot salt water into her sinuses every day to prevent nasal polyps from developing

• 6 ~ Meals and snacks Ella must eat each day in order to consume at least 2500 calories

• 7 ~ Quarts of Half-and-half Ella drinks each week

• 31 ~ Pills Ella swallows every single day

• 217 ~ Pills Ella swallows every week

• 868 ~ Pills she swallows every month

• 10,416 ~ Pills she swallowed this past year

• 70,000+ ~ Pills Ella has swallowed, so far, in her short seven years of life

WATCH ELLA'S VIDEO

While Ella’s story is full of hardships and responsibilities that no child should have to endure, she is still a wonderful little lady. She still loves fancy dresses and playing dress-up. Since acquiring her first Barbie about a year ago, she has now amassed a small army of Barbies and as many accessories as our house can hold. She has discovered a love and special talent for gymnastics and is looking forward to developing that over the next few years. And, she loves to read – having devoured well in excess of 100 books since last May.

While we try to stay upbeat about Ella’s future, the truth is that every day she gets closer to her first extended hospitalization, closer to needing those IV antibiotics, closer to that median life expectancy of 37 years. That seems like a great number, 37 years. It wasn’t so long ago that kids weren’t expected to make it to high school much less graduate, there have been many, wonderful advances in how to treat the symptoms of CF. But look at your own life… are you ready for it to end at 37 years? Or maybe you have passed that “milestone” already, would you give the intervening years back? And, would you be happy to give up hours everyday just to make sure you could keep breathing? That is exactly what people with Cystic Fibrosis do…

As I said there have been some fantastic advances in how to treat the symptoms of CF, but there is still no CURE. I believe that we are close. Scientists and researchers working with the CF Foundation have discovered some very promising compounds that could become very exciting new drugs for our kids, the kind that have people saying “CURE.” But there is only one way that those compounds make it to our homes… money.

We are fond of saying, “Money buys Science, and Science will save Ella’s Life.” And it is for that reason that I have written this letter, shared part of my life with you, and now that I ask you this question:

Won’t you please support our cause with a donation? Every dollar counts, so whether you can contribute $250 or can muster $10, please help us add tomorrows to the lives of those fighting Cystic Fibrosis.

There are several ways to become a supporter… My Branch has started a fundraising team called “Platt Beaverton Ella’s Elite” that ties us with 21 other teams honoring Ella this spring. I invite you to join our team, raise money yourself and celebrate with us on May 21st at Oaks Park Amusement Park at the Portland Great Strides Walk. If you are not able to do that then please make a donation and pass this letter on to everyone you know. All donations are 100% tax deductible.

Whatever level of support you are able to give, please know that I will hold you in the highest esteem and thank you again when we can say that CF stands for “Cured Forever.”

You can donate by simply clicking on the "Make a Donation" button on this page. Or you can send checks payable to "CF Foundation" to the Platt branch at: 4650 SW Pacific Ave. Beaverton, OR 97005

If you have any questions about the event, the disease or a donation, please do not hesitate to contact me.

Thank you... really.

Jon Deveaux

P.S. Please forward this message on to anyone and everyone you can think of... your family, friends, neighbors, co-workers, etc. by clicking on the "Send This Page to Others" button below. If you click on the button and it doesn't work, please simply forward this home page address (http:/www.cff.org/great_strides/jondeveaux) in an email message of your own. We need everyone's help in this important fight. Thank you so much!