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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This week’s site of the week is actually not a site about cystic fibrosis (CF), but one that is very useful for parents of kids with CF. The About.com Special Needs Children site has a plethora of information on topics such as school issues and IEP’s, family issues, and living with special needs children.

Terri Mauro, the Guide to Special Needs Children, is the author of two books about parenting special needs children. As the mother of two teenagers with special needs, Terri knows first-hand the struggles that parents face and she wants to share that knowledge with you.

Terri says:

“Almost everything important I've learned about raising my kids has come, in one way or another, from fellow parents of children with special needs. We can be an amazing resource for each other.”

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I once had a mom of a child with cystic fibrosis tell me that she felt like she was being held hostage by her child’s physician. This mom just didn’t click with the doctor. She didn’t feel comfortable asking questions or calling the doctor with concerns about her child’s symptoms. She felt like the doctor and his office staff thought she was overreacting and didn’t take her concerns seriously. She knew that her child’s doctor was a very good physician and she was confident in his abilities to treat her child, but she did not believe that this doctor had the same confidence in her abilities to mother her child. She thought about switching providers, but the next nearest CF center was several hours away and would require long treks across the state whenever her child was sick or in the hospital.

This mom was very frustrated by the whole situation and came to me for advice. I really felt for her, because she was a very involved and competent mom and she did not deserve to be treated like anything less than the strong CF mom that she was. I hated to see a personality conflict interfere with such an important physician-patient relationship, and I also hated to see this family’s lives complicated by needless trips to far away CF care centers when treatment was available locally.

My biggest concern in this situation was that the mom was already feeling uncomfortable calling the doctor with symptoms, and this was only bound to get worse without some sort of resolution. That is a recipe for disaster, because things can change very quickly for kids with CF and it’s important to seek treatment when problems do arise. On the other hand, not having a local physician or CF clinic could delay treatment when the child does become ill.

So, what was my advice to this mom? I told her that nobody should feel like they are being held hostage by their physician – ever. Then, I reminded her that she is ultimately in charge of her child’s treatment and I gave her some strategies to help her make the decisions she needed to make.

Does this story sound familiar to you? Have ever felt like you were held hostage by your physician? How did you resolve the situation?  Share your experience with other readers.

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The Starlight Children’s Foundation has a great interactive website called “Fitting CF into Your Life Every Day”. If you have a young child with CF, you’ll both love this site. It’s a bright, colorful, and easy to understand interactive experience that teaches kids all the basics about cystic fibrosis -- how breathing works, how CF affects breathing, the importance of nutrition, treatments, medicines, and so on. Its chock full of education but it feels more like a game. I especially like the Q&A section – lots of stuff there that kids want to know. When you and your child have a few minutes, I’d encourage you to check this site out together – it’s a great way to connect and to get your child involved in managing his everyday needs.

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