Senate Passes Clinical Trials Act!

This past Thursday night, the U.S. Senate passed S. 1674, the Improving Access to Clinical Trials Act, by unanimous consent.

All that remains now is for the House of Representatives to pass the bill as well. Even if you have already asked your Representative to sign on to the bill as a co-sponsor by clicking here. Now is the time to tell the House to pass the Improving Access to Clinical Trials Act.

The Improving Access to Clinical Trials Act would allow people with CF who are on public benefits to participate in important clinical research without losing their health coverage. To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove barriers to allow more people to do so.

Tell your Representative to pass the Improving Access to Clinical Trials Act today!

Creon Survey.....Paying $50!!!

Patients taking the pancreatic enzyme medicine CREON ® (pancrelipase) are needed to participate in assessing the CREON drug safety program. Eligible patients or their caregivers will complete a 15-minute internet or telephone survey and will be paid $50 for completing the survey. Patients and caregivers may only take the survey once. For more information and to see if you are eligible to participate, please contact BioTrak at 866-866-5856 or support@biotrak.com

I don't take Creon, but on CysticFibrosis.com, several people have commented they have taken the survey and gotten paid! So check it out if you do take Creon enzymes!!

This was in the latest issue of CysticFibrosis.com email newsletter.

CF Great Strides Walk Survery

Have you completed the Cystic Fibrosis Foundation's Great Strides Walk Survey?

You walked the walk, now talk the talk!

As a part of Team CF, your input is very important to the National Cystic Fibrosis Foundation. Tell them about your GREAT STRIDES experience by taking a brief survey.

It takes less than five minutes to complete the GREAT STRIDES survey. Your feedback helps us improve future events to better serve the CF community. I really want to encourage everyone who participated in a Great Strides Walk this year to complete this. So...take a few minutes right now to take this survey..... it is VERY SIMPLE, and literally, takes less than 5 minutes! Your feedback is important!!!

Also....as a huge advocate and volunteer with my local CF Foundation....I would love to hear your feedback as well on your local Great Strides Walk that you participated in. I would love to hear what activities you had, if any; what food was provided, if any. Did you have a team? What did you do to fundraise? to recruit team members? What works best for you? I find it beneficial knowing how other Great Strides Walks work in different parts of the country. It gives each of us ideas, that we may have never thought of. Or we might can help you come up with ideas for next year's Great Strides Walk. I love giving feedback, and helping wherever I can. Not only do I have my own team, but I've also worked on staff at our local CF Foundation and have experience "behind the scenes." I usually try to attend all of our chapter's walks if possible!! So feel free to share your experiences and feedback as comments to this post, or you can email me!!!

THANK YOU!!!

Register for CF Webcast!!!

Produced by the Cystic Fibrosis Foundation, this innovative series of Web casts brings the cystic fibrosis community together in a “Virtual CF Education Day” forum to learn from the experts about living with CF and the latest in CF research."Take the guesswork out of working with your CF care center!"

When: Thurs., Aug. 19 (8:00 p.m. ET) for a live Web cast, "Partnering for Care: Help Your CF Care Center Help You Thrive"

Watch this free Web cast for tips on working with your CF care providers to maximize your or your child's CF care.

The Web cast will feature CF experts:
Peter Mogayzel, Jr., M.D., Ph.D., Director of the Johns Hopkins Hospital CF Center and Pediatric Lung Transplantation

Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program

Drs. Mogayzel and Boyle will address questions about the following topics:

• How to partner with your child to reach your goals in managing CF
• How to partner with your care center in the transition from pediatric to adult care and the varying aspects and concerns with the change
• How to partner with your adult care center to successfully manage CF in your daily life
• How to partner with your care center when considering lung transplantation.

You can submit questions when you register and also during the live broadcast.

Click here to register for the webcast!

CF Foundation Announces Congressional Briefing

The CF Foundation is delighted to announce that Dr. Robert J. Beall, president and CEO of the CFF and Dr. Francis S. Collins, director of the National Institutes of Health (NIH) will brief the United States Senate on the ongoing efforts to develop promising medical research for rare diseases this Thursday, May 20.

The briefing will discuss how funding for medical research at NIH can be used to more quickly create new therapies for patients and save lives. The NIH is the primary federal agency for conducting and supporting medical research. Speakers will also discuss the lessons learned from the cystic fibrosis community’s successes in medical research that can map the way for other diseases.

Dr. Collins, a distinguished geneticist who led the international effort to map the human genome, is the co-discoverer of the cystic fibrosis gene. He will examine how funding for medical research at the NIH can be used to speed the development of new treatments for patients, and discuss the lessons learned from the cystic fibrosis community's successes that can map the way for other diseases.

Click here to listen to Dr. Collins talk about his dream for Cystic Fibrosis.

We need your help to make this important event a success. Click the below link to contact your senators!

Call your senators today and urge them to attend this exciting event!

Don't forget that May is National Cystic Fibrosis Awareness Month!

Take Your CF Deductions!!!!!

Join KnowCF members members LouLou, VMHoward and Julie in their first video conversation about Taxes and CF! I have not listened to this video yet, but based on the topics covered, I am very interested. I highly recommend checking this out, as a lot of CFers and CF family members are not familiar of what they can and can't deduct on their taxes related to CF!

**Moms/Dads**....definitely check this out if you are unfamiliar of what you can deduct! Look at the Nutrition and the Back at Home topics below!

This topical video series (three segments) focuses on United States tax law and deductions that may be allowed for health reasons. This engaging team has worked hard for your benefit, doing extensive research, sharing their stories, and designing a meticulous yet simple-to-grasp spreadsheet for you to model as you organize your own savings possibilities.

Three of the KnowCF e-Patient members, Lauren, Victoria and Julie have organized information on CF healthcare costs and tax deductions. These Health Opinion Leaders (HOLs) explain which expenses qualify for deduction and how to track expenses. They have created roughly fifteen minutes of engaging and polished footage on this very valuable topic.

These are the topics they will cover: (I have not listed every single topic and question. You can visit the website for more information and details)

1. What sort of medical expenses are deductible?

2. What is AGI or adjustable gross income, and how do I know if I should itemize or just take the standard deduction? How much do I need to have in deductions in order to be able to use them?

3. Can a caregiver use these deductions too?

4. What about special equipment and materials for cleaning my nebulizers?

5. What about things we wouldn’t be doing if it weren’t for CF, such as special disinfecting cleaning products and HEPA filters for indoor air purification?

NUTRITION:
6. Obviously healthy people eat food, how do I know what I can attribute to CF?

9. Are my vitamins deductible?

8. My child drinks nutritional drinks recommended by the doctor. Are those 100% deductible, or must a percentage be deducted that would not be attributable to CF

EXERCISE:
11. Is there a way to deduct my gym membership?

CF CLINIC:
12. the travel to my CF center deductible? Can I deduct miles to and from the doctor?

13. Can I deduct anything related to my transplant?

14. What about when my child is inpatient, can I deduct visitation mileage, parking, hotel and food?

BACK AT HOME:
15. Are home improvements deductible? / Can I claim home improvements that I made as a deduction?

16. Can I deduct the cost of trash?

17. How do I deduct electricity?

Click here to visit the KnowCF website! I personally have never come across this resource website. It branched from the CysticFibrosis.com Website. It looks like it can be very beneficial.

ACCESS - SHARE - GAIN AWARENESS

VOTE for CF!

I have a very special and close CF friend of mine who is currently waiting for a transplant. She is very sick and needs one soon! Toyota Racing's Sponsafy Your Ride Contest is currently under way! I'm not sure the exact details the winner received. However, the design that you are voting for will be applied to a 2 seater Nascar Show Car and the winner will also receive a trip package to see the Nascar Sprint Cup All-star Race! This would be huge for CF and Organ Donation....getting that awareness out and people recognizing JadaBug's Car...."Cure CF and Be An Organ Donor" for Jada!



Click here to Vote for JadaBug! There are 13 days left and you can vote every day! There are over 9,000 entries, so she really needs your votes! As always, thank you for your support!

New & Improved Pancreatic Enzymes

Although pancreatic enzyme therapies have been around for decades, they are now undergoing a more rigorous review to help ensure that people with cystic fibrosis receive only the best, most effective and safest enzyme treatments.

In 2004, the U.S. Food and Drug Administration (FDA) required that all pancreatic enzyme replacement therapies currently on the market be reformulated and undergo clinical testing in order to receive FDA approval.

More than 90 percent of people with cystic fibrosis take pancreatic enzyme replacements to help the body absorb essential vitamins and nutrients. In CF, thick, sticky mucus builds up in the pancreas, preventing the release of important enzymes that aid in digestion. This build-up can lead to malnutrition. Pancreatic enzymes combat this problem.

The first pancreatic enzyme replacement therapy to be evaluated and approved under this new mandate was CREON® by Solvay Pharmaceuticals, Inc. CREON received approval in May of 2009.

In September 2009, Eurand N.V. announced that the FDA approved its enzyme product, ZENPEP™ — the second enzyme therapy to be granted FDA approval.

In addition, Alnara Pharmaceuticals, Inc. is completing a Phase 3 long-term safety study of an enzyme called liprotamase. Following completion of the study, Alnara will carry out clinical and regulatory activities needed for FDA approval.

Other companies completing clinical trials for pancreatic enzyme products include Axcan Scandipharm (Ultrase® ), Digestive Care, Inc./DCI (PANCRECARB® ) and McNeil (Pancrease MT).

FDA review is an important step to ensure that people with CF are getting the maximum benefit from their pancreatic enzymes.”

Because there is a connection between better lung function and higher body weight, pancreatic enzymes are a vital part of CF care. It is important for people with CF to take pancreatic enzymes with all meals and snacks.

You can click on any of the links above for more information on a specific enzyme, or pharmaceutical company!

TOBI Resources on Facebook

Novarits Pharmaceuticals has created a resource page on Facebook, for TOBI. You can click here to visit the Facebook page and become a Fan!

TOBI (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. TOBI has not been studied in patients under 6 years of age, in those with a lung function outside of a certain range, or in those whose lungs contain bacteria called Burkholderia cepacia. Ask your doctor if TOBI is right for you.

Have you heard about the TOBI Co-Pay Program? Pay only a $10 co-pay for TOBI. Call 1-877-999-TOBI (8624) to confirm eligibility and enroll.

• How should TOBI be stored?


• How should TOBI be incorporated into a treatment routine?


• What's the difference between TOBI and compounded IV solutions of tobramycin used for inhalation?

Find the answers to these questions and other FAQs here, or visit the Tobi official website by visiting here.

There are a lot of us CF Bloggers (pre and post transplant) that currently use TOBI. It is one of the very few drugs that can treat the pseudomonas infections quite well.

Aztreonam Approved!!!!

I know several of you actually participated in studies of this drug. I actually was in the study as well, but discontinued it due to side effects. However, on Monday, the FDA approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. The drug was made possible by significant support from the Cystic Fibrosis Foundation, including an early $1 million investment to help develop the therapy. The approval of Cayston demonstrates that our drug development model, fueled by donors and volunteers like you, is working and making a real difference in the lives of people with cystic fibrosis.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics. Cayston is used in a 1 month on, 1 month off cycle, similar to TOBI. Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics. This shortened delivery time reduces the burden on patients, who -- on average -- have a treatment regimen of three to four hours per day.

“The Cystic Fibrosis Foundation’s early funding and ongoing support for Cayston played an important role in bringing this new therapy to patients,” said Bruce Montgomery, M.D., senior vice president, head of Respiratory Therapeutics, Gilead Sciences. “We are thrilled to help meet an urgent medical need for CF patients, and to support the Foundation’s mission to improve the lives of people with this terrible disease.”

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians. You can also visit their website for more information. Also, attached here is an official drug information sheet for patients.

The Cayston Access Program assists with reimbursement and access to Cayston. The Cayston Access Program reimbursement specialists can answer questions related to insurance coverage, financial assistance, specialty pharmacy referral, and claims appeal support. Attached here is a brochure with more reimbursement information.

Novartis CF Facebook/Twitter Resources

The CF Team at Novartis Pharmaceuticals Corporation is delighted to inform you that CFVoice has just joined the 300 million plus people on Facebook, where more than 45,000 are fans of CF-related pages. Novarits is proud to provide an online community for people living with cystic fibrosis. CFvoice is a place for motivation, inspiration and connection to the CF community.

Christopher Morgan, the fictional character from the Becoming Christopher and Christopher Chronicles films has joined Facebook and the 13 million people on Twitter. Christopher Morgan was created by Novartis Pharmaceuticals Corporation as an educational resource for the cystic fibrosis community. His story is inspired by research and interviews with people with CF, their friends, healthcare providers and caregivers. Join today to start receiving CFChristopher's tweets and to become a fan on Facebook.

Check out the CFVoice Facebook fan page for great CF content. This gives the CF Community another CF resource to keep up-to-date on CF-related news. And plus, most of us are on Facebook anyways, so it will be very convenient.

VX-809 Research Update

This week, we gained important new ground in our work to advance the development of new cystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial. VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508.

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.

VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.

The data from this trial pave the way for future studies of VX-809, including testing the therapy in combination with VX-770. Also developed by Vertex, VX-770 is an oral investigational drug that showed encouraging Phase 2 results in restoring the function of CFTR in patients with the G551D mutation of CF.

Research in the laboratory suggests that using two therapies in combination may increase CFTR function in cells with the Delta F508 mutation when compared to using a single therapy alone.

To read the full article (press release) or for more information on this study, click here.

CF Resources/Websites

I have posted a new website (blog) that provides information and resources for Cystic Fibrosis patients and families. CysticFibrosis.Net has a wide array of information on CFers staying healthy, the latest news regarding CF research and medications, suggestions and advice for parents on managing their child's CF and much more. I hope you will take the time to visit the website/blog. The site allows comments on all posts.

Need Help Paying for Pulmozyme?

Genentech® is committed to helping patients get access to the Pulmozyme® (dornase alfa) Inhalation Solution prescribed by their physicians. If you're having concerns about paying for Pulmozyme, we're here to help. Pulmozyme Access Solutions helps resolve specific access and reimbursement issues for individual patients every day. Our specialists are passionate about helping you access Pulmozyme and exploring every appropriate solution to coverage or reimbursement issues

Am I eligible?
You may be referred to a co-pay assistance program if you have:
* Public insurance (e.g., Medicare, Medicaid)
* Private insurance

Help for the Uninsured
The Genentech® Access to Care Foundation (GATCF)* was established to help qualified patients who are uninsured or who have been rendered uninsured because they have been denied coverage by their insurance company.
If you have no insurance or your health insurance plan has denied your Pulmozyme (dornase alfa) treatment, you can apply to GATCF to receive your medicine free of charge.

To learn more about Genentech's support offerings, call (800) 690-3023 from 6 AM to 5PM PT, Monday to Friday to speak live with one of our specialists, or visit Pulmozyme Access Solutions Website.

CF Education Day Fall Web Cast

CF Clinical Research: Learn, Ask, Join: A Live Virtual CF Education Day Web Cast

When: Thursday, November 19, 2009 @ 8 p.m. ET

Join the CFF for the fall Virtual CF Education Day Webcast to learn the latest in CF clinical research and ask what you can do to join a CF clinical trial. Based on presentations from the 2009 North American CF Conference, you will hear updates about CF drugs in the pipeline and learn the basic principles for clinical research and participation.

The two-part Web cast will feature: *George Retsch‐Bogart, MD, Associate Professor of Pediatrics at the University of North Caroline at Chapel Hill, AND *Elizabeth Hartigan, MPH, RN, CRM, Clinical Research Manager at Children’s Hospital of Pittsburgh of UPMC

The Web cast forum offers an opportunity for questions from the CF community to be answered. This educational tool helps to empower people with CF, families and friends to take an active part in CF care through increased knowledge about the research and the highest quality care.

Click here to register for this webcast!

CFVoice.Com

I've never really known much about this website and have only visited it a few times. After receiving an email about all the resources that were available via CFvoice.com, I was amazed! I highly recommend giving CFvoice.com a visit. Many of you may already be familiar with the website. Parents...there are lots of resources for you as well. Visit the website and/or click on the links below for more information.

For the 6-8 age group: Educational CF games and cartoons include:

Team Zude & You

The Game Arcade

Color with Zude

Memory Game

Zude Toons
Germ Jumper Game

Ages 9-12 has a Wacky Workshop with different activities to teach children about CF!
Food for Fuel

Bacteria Blaster Game
Meds in Me

Up Down Sideways Puzzle
Amazing Airways Game

Tween Videos

The Game Arcade

Ages 13-17 section: It's all about U! has some very useful resources and tools for connecting with other CF patients!

Mentor U

Teen Podcasts

Teen Videos

Ages 18-24: Transitions :Listen, watch, and read tips about transition into an adult CF life!

Young Adult Videos

Young Adult Articles

Young Adult Podcasts

CF Recipes

Adults: Movin' ON: Stories of caregivers, marriage, and family planning with CF!

Adult Videos

Adult podcasts

Adult Articles

CF recipes

There is a Parents and Caregivers Section as well that seems very beneficial!

It includes CF recipes, podcasts, and articles. It also has videos of other CF families and their stories and experiences. Lots of fun and resourceful information!

The site also includes community features, a newsletter emailed quarterly you can subscribe too, personalized calenders, screen savers and wallpaper for your computer, and much more!

Digitize your CF routine!

This Treatment Tracker tool from CFvoice.com can help you organize and track your treatment information right on your computer! You can track and organize medications, airway clearance methods, nutrition information, and much more. It was designed especially for CF patients only. I received an email about this and I thought I would check it out. Although I really don't need it for myself, I thought it might be beneficial to some of you other CFers out there, and maybe even parents or caregivers. I highly recommend checking out. It's probably more for those CFers who don't adhere to routines very well or have a hard time keeping track of when to do what, when to take what, etc., as well as for parents of CF kids. Maybe for those parents who are having a difficult time getting their child to adhere to doing their vest or taking certain medications, there is an option where you can check off each time you complete an activity. Click here to check this tool out and to view a demo. You do have to register on the website, but it's free. Novartis Pharmaceuticals sponsors CFvoice.com. and is highly involved in the CF community.

Track treatments by type
From diet to medications, enzymes to exercise, you can enter all types of treatments.

See each treatment's details
View your treatment details like type, amount, time of day, frequency, and more.

Monitor your adherence
Track your progress. Green checkmarks show the treatments you've completed. Missed treatments are highlighted to help identify possible areas for improvement in your schedule.

Print for your reference
Save your treatment schedule as a PDF to print for your next doctor's appointment or visit to your CF center.

Shop with GoodShop!!!!

As you begin shopping for Christmas (and really, for any occasion you buy gifts for), remember to use GoodShop when shopping ONLINE! Goodshop partners with numerous popular online retailers such as Amazon, Barnes & Noble, Target, Walmart, Gap, Apple, and HUNDREDS MORE! These stores will donate a percentage of your purchase back to a charity when you use GoodShop.

To use, simply visit

wwww.goodsearch.com. In the charity box, enter "Cystic Fibrosis Foundation" and click "verify." Cystic Fibrosis Foundation will pop up and then you can begin to shop! You can link to the store of your choice and shop as usual.

GoodShop also recently launched a toolbar, in which you can download. By downloading this toolbar, every time you visit the website and make a purchase, it will automatically be credit to the Cystic Fibrosis Foundation!

At last but not least, if you use GoodShop.com when searching the Internet (just like you do when you use Google, Yahoo, MSN, etc.), a penny is donated to a charity for every search. All you have to do is visit the website: www.goodsearch.com, enter "Cystic Fibrosis Foundation" in the charity box and begin your search like usual. This is such an easy way to raise some extra money without costing you anything!

And guess what??? So far, the Cystic Fibrosis Foundation has earned $12,100 using GoodShop!! WOW!!! So I encourage all of you online shoppers, to utilize this tool and help support the CF Foundation while shopping!

Student With CF Wins 17K Scholarship

Solvay Pharmaceuticals announced the 2009 Thriving Student Achiever, Amanda R. In honor of the 17th year of the SolvayCARESSM scholarship program, Amanda was awarded an educational scholarship totaling $17,000. Amanda’s attitude about life is truly inspiring!

"CF is a part of me and who I am, but it runs alongside me and does not stand in my way," said Amanda Rudd, 2009 SolvayCARESSM Thriving Student Achiever and student at Salt Lake Community College, Salt Lake City, Utah. "Earning the Thriving Student Achiever scholarship has lifted some of the financial burden of attending college so that I can focus on my studies to become a dental hygienist.

"Solvay Pharmaceuticals congratulates Amanda on being named the 2009 Thriving Student Achiever," said Dr. Stephen Hill, president of Solvay Pharmaceuticals, Inc. "She embodies the positive attitude and spirit of all of our outstanding scholarship recipients, who are each role models for the CF community."

As a fellow CF patient, I think you’d love to watch Amanda’s video! Click here to view her video and list of accomplishments! (I tried embedding the video but it didn't work..sorry)!

Since 1993, Solvay Pharmaceuticals has donated more than $2 million dollars in scholarships to high-achieving students with CF. For more information about the SolvayCARESSM Scholarship program, click here!

Take Back America

I’ve heard so much “It’s just hopeless; there’s nothing I can do.” That’s the way a lot of Americans feel; but, we CAN do something. Besides praying for our country, we need to do everything we can to turn it around.

How to Take Back America Conference webcast live this weekend at AFA.net (September 25-26th)

The event begins this Friday morning and ends on Saturday evening. The entire conference will be streamed live on AFA.net.

The AFA (American Family Association) has joined together with a consortium of conservative organizations to host a top-rate, momentum building, leadership conference that will teach the grassroots how to use the Internet and how to connect after the conference using new technologies like "Webinar," as well as equip them with talking points on battle-front issues and record every workshop. Here is your opportunity to see every great workshop and speech given at this year's conference.

Review and choose the workshops you want to see - at no cost!
-How conservatives can win in 2010
-How to deal with vote fraud, the Census, and ACORN
-How to lobby federal legislation & policy
-How to bring youth into the conservative movement
-How to defend traditional marriage and DOMA
-How to understand Islam
-How the media can help us take back America
-How to stop feminist and gay attacks on the military
-How to counter the homosexual movement
-How to stop the entry of illegal aliens and drugs
-How to deal with global warming, cap and trade
-How to stop the killings: pro-life solutions


WHO IS AFA?
The American Family Association (AFA) was founded in 1977 by Donald E. Wildmon, who was pastoring First United Methodist Church in Southaven, Mississippi, at the time. The American Family Association represents and stands for traditional family values and exists to motivate and equip citizens to reform our culture to reflect Biblical truth on which it was founded. We believe that God has communicated absolute truth to man through nature and the Bible, and that all men everywhere and at all times are subject to His authority. Therefore, a culture based on Biblical truth best serves the well-being of our country as evidenced by the vision of our forefathers as set forth in the Declaration of Independence.

Today, AFA is one of the largest and most effective pro-family organizations in the country. The impact of AFA on pro-family issues is recognized nationwide. It is AFA’s goal to be a champion of Christian activism.

To that end, AFA spurs activism directed to:
* Preservation of Marriage and the Family
* Decency and Morality
* Sanctity of Human Life
* Stewardship
* Media Integrity

Click here to learn more about AFA, how it has made an impact on our nation, AFA’s recent accomplishments, and how to sign up for AFA action alerts and special projects!