Thanks to Miley Cyrus and her new tattoo, the world is talking about cystic fibrosis. True, much of the chatter is centered on a debate of whether Miley's newly acquired "Just Breathe" tattoo is real or fake. I don't get caught up in that debate. Frankly, I don't really care. I just think it's great that cystic fibrosis, a disease that many people have never even heard of, is a household word right now since Miley is sporting a phrase beneath her breast that is often connected with cystic fibrosis. Since awareness is a key element in finding a cure, we owe this pop star a debt of gratitude. Thanks, Miley.

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It can be pretty tough to make ends meet these days. Many folks are cutting corners and learning to get by with a lot less. Recreation is often one of the first expenses to get cut, but staying active is so important for those with cystic fibrosis - even in this struggling economy. If finances are keeping you from getting involved in activities, I've got some good news for you. The Cystic Fibrosis Lifestyle Foundation is offering $500 recreation grants to young adults with CF, and you may be eligible to receive one.

Visit the  Cystic Fibrosis Lifestyle Foundation website for more details on the grant, or to download an application.

Earlier this year, I told you about a voluntary recall of Tylenol products because of possible contamination with Burkholderia cepacia. Now, I'm going to ask you all to check your medicine cabinets again.  Last Thursday, Proctor & Gamble issued a voluntary recall of three lots of Vicks Sinex Nasal spray sold in the United States, United Kingdom, and Germany because B. cepacia was found in some of the product that was manufactured in Germany but being sold in the United States.  The German and UK lot numbers are being recalled and undergoing testing because they were made from the same raw ingredients as the contaminated US lot.

The lot numbers and products being recalled are:

9239028831 ( United States) - Vicks Sinex Vapospray 12-Hour Decongestant Ultra Fine Mist, 15 ml

9224028832 (United Kingdom) - Vicks Sinex Micromist Aqueous Nasal Spray Solution, 15 ml

9224028833 (Germany) -  Wick Sinex Schnupfenspray Dosiersystem, 15 ml

If you find that you have any of the recalled products, do not use them. Visit Proctor and Gamble for information about  how to get a refund or replacement.

More about  B. Cepacia

If you're wondering what's new in the world of cystic fibrosis research, or if you're wondering how you can get involved with a clinical study, you won't want to miss the Cystic Fibrosis Foundation's upcoming webinar, "CF Clinical Research: Learn, Ask, Join".

The webcast, which is scheduled for November 19th, will feature basic principles of cystic fibrosis research, participation in clinical trials, and the latest updates about cystic fibrosis drugs currently being studied. The webinar is free but you have to pre-register on the CFF website.

How the Cystic Fibrosis Foundation Can Help You

Twenty years ago, Dr. Francis Collins and two of his colleagues discovered the cystic fibrosis (CF) gene. Earlier this month, the newly appointed director of the National Institutes of Health (NIH) was the keynote speaker at the 23rd Annual North American Cystic Fibrosis conference. Dr. Collins spoke about how much we have learned about CF since his breakthrough discovery, and the life-lengthening treatments that we now have because of it. Then, this brilliant and highly respected scientist pulled out a guitar and began to sing a song that he wrote about finding a cure for CF called "Dare to Dream". It was a heartwarming, inspiring moment that ended in cheers and a standing ovation from the crowd.

Wish you would have been there? Yeah, it would have been great. You can still catch the performance online, though.

Check out the video clip of Dr. Collins singing "Dare to Dream" .

If you or somebody you know has a car that's just taking up space in your driveway, I've got good news for you. The Cystic Fibrosis Foundation has partnered with the National Vehicle Donation program to offer you the opportunity to turn your unwanted vehicle into cash for cystic fibrosis research. You can donate any kind of vehicle -- running or not. All you have to do is contact National Vehicle Donation at 800-456-5517 or go their website to register your donation. They will make all the arrangements to have your vehicle picked up and sold at auction or sold for scrap metal - whichever would produce the best selling price. Once your car is sold, about 80% of the proceeds will go directly to the Cystic Fibrosis Foundation as a charitable donation that you can claim on your taxes.

What could be easier than that? You get to help support cystic fibrosis research, dispose of your clunker without any hassle and get a tax deduction to boot - all with one quick phone call.

More about the Cystic Fibrosis Foundation

As we head into another flu season, it's important to remember that we're not out of the woods yet with H1N1 swine flu. The virus continues to rear its ugly head as the world awaits a vaccine. There still is no definite release date, but the vaccine is expected to be available sometime this month. When it is available, people with cystic fibrosis and their family members should get the H1N1 flu shot in addition to the regular seasonal flu shot. You should be able to get the vaccine at your CF care center or local health department. You can also visit the American Lung Association's flu clinic locator to search for a vaccine site near you.

Last week, Tylenol manufacturer McNeil Consumer Healthcare issued a voluntary recall of 57 lot numbers of 21 different varieties of Tylenol brand acetaminophen because the raw materials that were used to make it were contaminated with Burkholderia cepacia, a bacteria that can cause serious lung infections in people with cystic fibrosis. If you have any infant’s or children’s Tylenol liquid in your medicine cabinet, you’ll want to go pull it out and check the lot numbers. More information about the recall, including specific varieties and lot numbers affected, can be found on the Tylenol website.

You know, 22 years ago when I first became a nurse, I would not have believed that I’d be sitting here today writing about a college scholarship for people with cystic fibrosis. In those days, kids with CF rarely lived past adolescence. We all hoped that someday there would be a cure or new treatments that allowed kids with CF to live long, productive lives. But, in my wildest dreams I never imagined seeing so much progress in my lifetime. As I look back with sadness at the youngsters I’ve met throughout my career whose lives ended too soon, I also look forward with great joy at the young adults living with CF today who are thriving and enjoying adult lives. Yes, 1987 Nurse Lori, you heard me. In 2009, lots of folks with cystic fibrosis go to college – and Solvay Pharmaceuticals helps make that happen.

Have you heard about the SolvayCares scholarship? It’s an awesome opportunity provided by Creon manufacturer Solvay Pharmaceuticals. Thanks to Solvay’s generosity, college has become more than a dream for many ambitious young adults with cystic fibrosis. This year, 40 recipients were selected to receive $2500 scholarships. In honor of the scholarship’s 17th year, one of these young people will receive an additional $17,000 in scholarship funds from Solvay – and you can help pick the winner.

As you’re out and about on the net this week, be sure to surf over to the SolvayCares Scholarship website and learn more about the 40 recipients. You’ll be touched and inspired by the essays and artwork that each of the students submitted. After you read all the students’ profiles, you can vote for the one you’d like to see win. If you’re anything like me, it’s going to be hard for you to choose just one. These kids are all amazing!

Voting ends October 15th, so be sure to stop by the SolvayCares Scholarship site and cast your vote soon.

If you have cystic fibrosis, you may be eligible to participate in a clinical trial that would give you access to treatments that would otherwise be unavailable. That’s a huge benefit for you, but you’ll also be benefiting others with cystic fibrosis if the clinical trial leads to a new treatment or a cure. It would be great if everyone who qualifies could participate.

Unfortunately, this is one area where our current health care system is broken. With the laws we have now, people who are receiving government health care benefits risk losing them if they participate in a clinical trial. That’s a risk too big to take for someone with CF. Needless to say, many people opt not to participate because the risk is greater than the potential benefit. That’s a shame. You should not have to choose between participating in a clinical trial and having health insurance. Thankfully, you may not have to for much longer.

Last week, a bill was introduced in the Senate that would allow people with rare diseases to participate in clinical trials without losing any of their health benefits. For me, it’s a no-brainer. I believe that’s the way it should be, because we all stand to benefit from the knowledge gained from research.

If you agree that this bill must become law, you can help make it happen by contacting your state representative and letting him know how you feel. The Cystic Fibrosis Foundation makes it easy for you with a form letter that you can personalize and send via email, or if you prefer, send via postal mail to your representative. Whatever your thoughts may be on the issue, this is your chance to speak up. I hope you’ll take a few minutes to make your voice heard.

More about clinical trials

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