In a Garden of Sixty-Five Roses 2009

On August 25th 2009, The Living Breath Foundation held it's annual fundraiser at Tehama Country Club in Carmel, California. 220 guests came to the annual event benefiting those living with Cystic Fibrosis. A silent auction was held in Tehama's court yard while guests mingled and enjoyed wine provided by Ventana Vineyards, after which a fantastic dinner was severed in Tehama's main ballroom. Sandi Eason was the Mistress of Ceremonies and Angel Haynes was this years guest speaker. Angel is a 25 year old living with Cystic Fibrosis who spoke on her life and the challenges of living with CF. Bob Rosenthal, the auctioneer, kept the live auction fun and entertaining.

We are still working on the final total for the evening but we feel great about what has been tallied so far. We are looking forward to putting these funds to use in helping patients with CF!

Cystic Fibrosis Physical Therapy of Toddler

I found this video on youtube on how a parent does physical therapy on their toddler. I thought it was very informative.

What is Cystic Fibrosis?

The Following information comes from The Boomer Esiason web site.

What is cystic fibrosis?

Cystic fibrosis is a life-threatening disease that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that leads to lung damage.

Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.

Symptoms

The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections, like pneumonia or bronchitis
• Wheezing or shortness of breath
• Poor growth/weight gain in spite of a good appetite
• Frequent greasy, bulky stools or difficulty in bowel movements
• Small, fleshy growths in the nose called nasal polyps

Sometimes people are told that they have asthma or chronic bronchitis when they really have cystic fibrosis. New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects). Scientists have found more than 1,500 different mutations of the CF gene.

How does CF affect the lungs?

Scientists have many different ideas about what goes wrong in the lungs of a person with cystic fibrosis, but it all begins with defective CF genes. Normally, the healthy CF gene makes a protein — known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator) — that is found in the cells that line various organs, like the lungs and the pancreas. This protein controls the movement of electrically charged particles, like chloride and sodium (components of salt) in and out of these cells. When the protein is defective, as in cystic fibrosis, the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of germs becomes very thick and difficult to move. And because it is so hard to cough out, this mucus will clog the airways and lead to infections that damage lungs.

Causes

Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics, including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.

To have cystic fibrosis, a person must inherit two copies of the defective CF gene — one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

Who gets cystic fibrosis?

Approximately 30,000 people in the United States have cystic fibrosis. An additional 10 million more — or about one in every 31 Americans — are carriers of the defective CF gene, but do not have the disease. The disease is most common in Caucasians, but it can affect all races.

What is the life expectancy for people who have CF (in the United States)?

There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant now diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago.

In 2005, the predicted median age of survival rose to 36.5 years, up from 32 in 2000. The steady rise of the median predicted age of survival suggests how improvements in treatment are advancing the lives for those with CF. In 1955, children with CF were not expected to live even to first grade. Today, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage, and families of their own.

Is cystic fibrosis fatal?

Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments, and therapies, along with proper CF nutrition, can lengthen and improve the quality of life for those with CF.

When will there be a cure?

Because CF researchers are blazing new trails in drug development and gene therapy, experts have no way of saying for sure when a cure will be available. Certainly many children today have the chance to live long and full lives. In fact, for the first time in the history of the disease, many people with CF are now living into adulthood — more than 40 percent of people with CF in the United States are age 18 or older.

The “aging” of the cystic fibrosis community is largely due to the increase in innovative new treatments and specialized medical care. But a better quality of life and partially increased length of life are simply not enough. That is why BEF supports the CF Foundation’s efforts to expand and strengthen the drug development pipeline of potentially life-saving new therapies while, at the same time, supporting a vital care center network.