Thank You so much for supporting our efforts in promoting Cystic Fibrosis awareness and raising funds for critical research neces sary to help us find a cure!  Our pinup campaign brought in $501.00!

We are excited to announce that the Bowl for Breath tournament has raised a little over $4,200 in donations so far, with more still coming in!! We could not have done it without all of you!  Thank you so much.  All monies received will be forwarded to our local CF Chapter in Liverpool, NY to benefit the Cystic Fibrosis Foundation.  Visit www.cff.org or www.cff.org/chapters/centralny for more information.

For those of you unable to make the event, or people with donations still to turn in, you may send them to:

                     Yancey Brown, 11218 County Highway 17, East Branch, NY 13756

OUR STORY:  Judging from this picture, you would never be able to tell there's a single thing wrong with Bethany & Emly.  They play sports, run, fight with each other, play, raise rabbits, have dogs.   Unfortunately, both girls have a life-threatening illness called Cystic Fibrosis (CF).  Every day is a fight to keep Bethany and Emily in “good health.” Only 31 people reading this are likely to be a carrier of the CF gene.  If 2 carriers have a child with CF, there is a 1 in 4 chance that their child will have the disease.  (Be sure to scroll down to read more about their story and see pictures of their "everyday life" to say in good health!).  The average life expectancy is 37.  Currently, there is no cure for CF.  

EVERYDAY LIFE FOR A CF PERSON:  Bethany (left) & Emily (right) awaken early in the morning to do a variety of breathing treatments for 20 minutes just to shake up the mucus in their bodies & then again for 20 minutes at night before they go to bed. In addition, the girls each take roughly 40 pills/breathing treatments for managing CF. Every time the girls eat any type of meal, they have to take 3-4 enzymes just to be able to digest their food and ensure nutrient absorption, to prevent malnutrition.  Here's most of the 1-month supply of meds that the girls take.  The girls drink 1-2 cans of Pediasure daily to ensure they get 2,800 calories every day.  So many calories are necessary due to malabsorption.  

WHAT IS CF? Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: 

          - clogs the lungs and leads to life-threatening lung infections; and 

          - obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. 

THE CHALLENGES OF CF:  Managing CF requires many daily medications, time consuming breathing-treatments and numerous doctor visits that drain family resources. In CF, thick mucus blocks small tubes and ducts in the respiratory, digestive and reproductive systems, leading to chronic lung infections and malnutrition. For many, other organs become seriously compromised. Avoiding germs and keeping their hands clean are critical as even minor illnesses like the common cold can cause permanent and irreversible lung damage.  Many times, it takes these kids 21 days and numerous antibiotics to get over a common cold and even then  Emily, who's only 8, already has mild Bronchiectasis, an abnormal widening of one or more airways. Extra mucus is made in the abnormal airways which makes her more prone to lung infections.

DID YOU KNOW?  Children with CF born in the 1970's were expected to live 11 years. Now, children like Bethany & Emily can expect to live to 37, BUT, that's still just an average!  We still need a cure!  And that's where your donation makes such a difference! CF affects only 30,000 Americans! So raising funds to help find a cure is critical!

HOW DOES CF AFFECT YOU?   CF affects the respiratory, digestive and reproductive systems. In the respiratory system, airways become obstructed; mucus builds in the lungs causing breathing problems; trapped bacteria create inflammation and lung infections. Eventually, damaged lungs lose capacity and elasticity.

This is just a very brief description of what these girls go through each and every single day, without fail!  My name is Alyssa & I'm their cousin. If I wasn't related to these girls I probably wouldn't have any idea what CF actually is.  But because I do, I just wanted to share this information to help people realize just how serious this condition really is and hope that you will join us in our efforts to spread awareness and help make “CF” stand for “CURE FOUND”!

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Comments (1)

• |204.14.61.xxx |2010-02-12 12:49:40 yancey brown
  thank you all for helping out. The ONLY way to find a cure comes from you. ALL research is done through donations from people like yourselves. Help make Bethany and Emily along with the other 30,000 CF kids in America live a long life. God Bless you all
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