TATOO INSPIRES MILEY

Miley Cyrus' tattoo is a constant reminder never to take life for granted.
The Hannah Montana star recently had "Just Breathe" etched under her left breast as a tribute to her late grandfathers and one of her closest friends, who died of cystic fibrosis, and gets her inspiration from it.
She said: "It reminds me not to take things for granted. I mean, breathing - that was something none of them could do, the most basic thing. And I put it near my heart, because that is where they will always be."
Although Cyrus, 17, is afraid of needles, she insisted she didn't feel any pain because the tattoo meant something to her.
She told Harper's Bazaar magazine: "It really doesn't hurt if you're thinking about the meaning. I could never get a meaningless tattoo, but I think that if you're doing something that's important, that's significant in your life, it takes some of the pain away."

Flu Season Is Here — Are You Ready?

This year’s flu season is different from years past. Not only does everyone have to remember to get their seasonal flu shot, but many people, including those with cystic fibrosis who are “at high risk,” also have to get vaccinated for the new H1N1 flu.

H1N1 flu is the specific type of virus that is causing the current flu pandemic, or worldwide infection. It has also been called “swine flu.”

The Centers for Disease Control and Prevention (CDC) has determined that the 2009 H1N1 flu virus spreads easily between people. Like seasonal flu, H1N1 flu may cause a worsening of chronic medical conditions, like cystic fibrosis.

If you have CF and you or your child with CF have the following symptoms, seek immediate medical attention: fast breathing or trouble breathing, not waking up or interacting, pain or pressure in the chest or abdomen, sudden dizziness or confusion.

Reducing Your Risk

People with CF and those who live in the same household are encouraged to:

1. Get the H1N1 flu vaccine.

o Based on information from the CDC, the CF Foundation and its Influenza Advisory Group have identified all people with CF and those who live in the same household as “high risk.” This means that people with CF and their household members should get the H1N1 vaccine as soon as possible.

2. Get the seasonal flu vaccine.

3. Minimize the spread of germs by:

o Cleaning your hands often with soap and water or using alcohol-based hand gels.

o Using a tissue when coughing or sneezing, then cleaning your hands.

o Avoiding touching your eyes, nose and mouth since germs are spread that way.

o Staying away from others if you are ill.

4. Watch for symptoms of the flu and if they appear, call your doctor. Symptoms include:

o Body aches and headache

o Fatigue

o Fever and chills

o Increased cough

o Sore throat

5. If you get a fever, call your doctor immediately – whether you have received the H1N1 vaccine or not. A fever is defined as 100.4 degrees Fahrenheit or 38 degrees Celsius.

If your doctor thinks you have influenza, he may treat you with Tamiflu® to reduce the severity and duration of your infection.

Getting the Vaccine

Production of the H1N1 vaccine has been slower than expected. However, distribution of the H1N1 flu vaccine is underway in all states.

To find out where you can get the H1N1 vaccination:

Please note, the fastest way to get the H1N1 vaccine may not be through your CF care center.

Call your primary care physician and ask if they are offering the H1N1 vaccine.
Call your CF care center and ask if they are offering the H1N1 vaccine.
Refer to the H1N1 flu map for state-specific information on H1N1 flu vaccination or find your State Health Department to get local information.
Learn More

The H1N1 flu map for state-specific vaccination information on H1N1 flu
FAQs on seasonal and H1N1 flu
The CF Foundation’s Guidance on Seasonal and H1N1 Influenza (posted 09/22/09)
CDC’s H1N1 flu Web site
www.flu.gov

Beth Waits on Double Lung Transplant

Susan- I was inspired to read your story on your foundation’s website. I was prompted to learn more about the journey an adult woman with CF facing a double lung transplant can expect. I have a friend who this very minute is at the crossroads of her lifelong fight with CF. She is currently on a ventilator at the Mayo Clinic in Jacksonville, FL. At this point only a double lung transplant can save her, and she doesn’t have much time. We are rallying wisdom and prayers that her new lungs arrive soon.

Her family has been very involved in the NE Florida chapter of the CF foundation. Beth’s husband Jim has chaired the 65 Roses Golf Tournament in Jacksonville for the last 7 or 8 years and have raised hundreds of thousands of dollars for the foundation. It seems only fair that her lungs come soon- she is really fighting hard but struggling. You can read about her and monitor her progress on this great site set up so that family and friends can receive updates and rally together for Beth- www.caringbridge.org/visit/bethmccarthy. Jim, her husband, has been giving daily updates in the “Journal”, and visitors to the site have been leaving great and inspiring words of support in the “Guestbook” section.

She is a beautiful young woman and has tremendous family, friend, and spiritual support. Just felt compelled to write to you after reading your story. She is about the same age as you when you received your lungs. Thanks for making your story public for us to further understand.

Inspire Completes Patient Enrollment

Inspire Completes Patient Enrollment In Three Late-Stage Clinical Trials In Cystic Fibrosis


Inspire Pharmaceuticals, Inc. (NASDAQ: ISPH) announced today patient enrollment is complete in three of its late-stage clinical trials. "We are pleased to be executing on our strategic plan with the achievement of these patient enrollment milestones in the clinical development programs for denufosol, PROLACRIA™ and AZASITE®, as this places us in a position to have top-line results from all our late-stage clinical programs within 18 months. We would like to thank the dedicated clinical investigators, study coordinators and patients who participated in our trials as well as the Cystic Fibrosis Foundation and its affiliates for raising awareness of the importance of participating in clinical trials," stated Benjamin R. Yerxa, Ph.D., Executive Vice President and Chief, Research and Development. Denufosol Tetrasodium for Cystic Fibrosis Inspire announced today that TIGER-2, the Company's second Phase 3 pivotal clinical trial (Trial 08-110) with denufosol tetrasodium inhalation solution for the treatment of cystic fibrosis (CF), has completed patient enrollment. TIGER-2 is a 48-week trial comparing 60 mg of denufosol to placebo, administered three-times daily by jet nebulizer, in a targeted 450 CF patients. The Company expects to have top-line results from TIGER-2 in the first quarter of 2011. "We are excited that patient enrollment in TIGER-2 is complete. This is an important step toward bringing this potential new treatment to cystic fibrosis patients," said Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation. "Denufosol's novel approach to treating the underlying ion channel defect in CF lung disease makes it a promising therapy, and we look forward to the results from this trial."

Recent Patient Assistance

A teenager was recently diagnosed with CF. Both parents had been out of work for several weeks. Mother's unemployment was about to end. Reaching Out helped by paying the family's power bill.

Is Your Showerhead Harboring Hidden Dangers?

WASHINGTON (AP) - In what may be the scariest shower news since Alfred Hitchcock's "Psycho," a study says showerheads can harbor tiny bacteria that come spraying into your face when you wash.

People with normal immune systems have little to fear, but these microbes could be a concern for folks with cystic fibrosis or AIDS, people who are undergoing cancer treatment or those who have had a recent organ transplant.

Researchers at the University of Colorado tested 45 showers in five states as part of a larger study of the microbiology of air and water in homes, schools and public buildings. They report their shower findings in Tuesday's edition of Proceedings of the National Academy of Sciences.In general, is it dangerous to take showers? "Probably not, if your immune system is not compromised in some way," lead author Norman R. Pace says. "But it's like anything else — there is a risk associated with it."The researchers offer suggestions for the wary, such as getting all-metal showerheads, which microbes have a harder time clinging to.Still, showerheads are full of nooks and crannies, making them hard to clean, the researchers note, and the microbes come back even after treatment with bleach.People who have filtered showerheads could replace the filter weekly, added co-author Laura K. Baumgartner. And, she said, baths don't splash microbes into the air as much as showers, which blast them into easily inhaled aerosol form.It doesn't seem as frightening as the famous murder-in-the-shower scene in Hitchcock's classic 1960 movie. But it's something to be reckoned with all the same.

The bugs in question are Mycobacterium avium, which have been linked to lung disease in some people. Indeed, studies by the National Jewish Hospital in Denver suggest increases in pulmonary infections in the United States in recent decades from species like M. avium may be linked to people taking more showers and fewer baths, according to Pace.Symptoms of infection can include tiredness, a persistent, dry cough, shortness of breath, weakness and "generally feeling bad," he said.

Showerheads were sampled at houses, apartment buildings and public places in New York, Illinois, Colorado, Tennessee and North Dakota.The researchers sampled water flowing from the showerheads, then removed them, swabbed the interiors of the devices and separately sampled water flowing from the pipes without the showerheads.By studying the DNA of the samples they were able to determine which bacteria were present.They found that the bacteria tended to build up in the showerhead, where they were much more common than in the incoming feed water.Most of the water samples came from municipal water systems in cities such as New York and Denver, but the team also looked at showerheads in four rural homes supplied by private wells. No M. avium were found in those showerheads, though some other bacteria were.In previous work, the same research team has found M. avium in soap scum on vinyl shower curtains and above the water surface of warm therapy pools.And stay tuned. Other studies under way by Pace's team include analyses of air in New York subways, hospital waiting rooms, office buildings and homeless shelters.

The research was funded by the Alfred P. Sloan Foundation and the National Institute of Occupational Safety and Health.Virginia Tech microbiologist Joseph O. Falkinham welcomed the findings, saying M. avium can be a danger because in a shower "the organism is aerosolized where you can inhale it."In addition to people with weakened immune systems, Falkinham also cited studies showing increased M. avium infections in slender, elderly people who have a single gene for cystic fibrosis, but not the disease itself.Two copies of the gene are needed to get cystic fibrosis, but having just one copy may result in increased vulnerability to M. avium infection as people age, said Falkinham, who was not part of Pace's research team.___

"Thank You" to Reaching Out

I am an adult CF patient on disability. My husband recently lost his job. Reaching Out helped me with a hospital bill payment. I am so thankful for the kindness and help that Reaching Out offers to CF patients and families. THANK YOU SO MUCH!

Dear Reaching Out:
I can't thank you enough for your help this month.As a CF Mom and single parent, I have really been strugglingto handle all of the bills I have to pay. Thank you so much for your help and thank you for the surprise GAS CARD! What a big help!

Thank you for your act of kindness toward our family. May God continue to Bless your Organization.