One month away from the 3rd Annual Country Concert & Motorcycle Ride for CF

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Posted by Cystic Fibrosis Country Concert | Posted in Country Concert for Cystic Fibrosis | Posted on 23-07-2010

Country Concert for Cystic Fibrosis

Hi everyone…WOW!!   It is just a month away from the  3rd Annual Country Concert & MC Ride for CF . We have been planning  a long time for this day and  we hope you will come out and support Paige and others like her that have CF .
We have allot planned  so everyone can have a good time . Some of the  highlights  include the 65 mile  ride with Pig Roast Lunch , the great concert starting at 1pm which features Jeanne Zano Band, Crystal Martinez, Tim Johnson Band, Farmers Daughter, KARTUNE, Crossfire & Big Carl & the Mudpond Boys .
There’s also $1 Miller Lite & Yuengling,  great food and  lots of vendors. There is so much more that we can’t fit it in this e-mail ; So please check out our website www.cfconcert.com for all the details.


Help Push the Clinical Trials Bill Over the Finish Line

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Posted by Cystic Fibrosis Country Concert | Posted in Country Concert for Cystic Fibrosis | Posted on 20-07-2010

Country Concert for Cystic Fibrosis

Visit Your Representative in Your Community

YOU can help more people participate in CF clinical trials, increase awareness of CF, and foster relationships between members of the CF community and Congress by signing up for Make Every Breath Count, the CF Foundation’s third annual national advocacy campaign.

Six year old Ella Deveaux kicked off the 2010 Make Every Breath Count campaign by meeting with Senator Ron Wyden in Oregon. “It was a wonderful experience for Ella to meet with Senator Wyden,” said her father, Oregon State Advocacy Chair Jon Deveaux. “Our family is so grateful for his efforts to ensure new therapies for patients who need them, like Ella.”

Sign up for Make Every Breath Count to speak out for CF. Once you register, your State Advocacy Chair or a Foundation staff person will give you the tools and support you will need to meet with your members of Congress.

24 Teens Make Their Voices Heard on Capitol Hill during Teen Advocacy Day 2010

On Thursday, June 24, two dozen teens from all over the country came to Washington, DC to advocate on behalf of their siblings, cousins, and friends with cystic fibrosis.

Thanks to the combined power of your efforts and the advocacy of these teens, 14 additional members of Congress signed on to cosponsor the “Improving Access to Clinical Trials Act” within days of the event, with more working to join the legislation soon.

Your calls, emails, letters, and meetings are working! Please keep up the pressure by:

  1. Registering for the Make Every Breath Count campaign.
  2. Calling and writing your senators about the clinical trials bill, and, ask your friends, family, and co-workers to do so as well!

You can help ensure new therapies for CF and other diseases move swiftly from the research stage into the hands of patients who need them.

Thank you for your support!


Home Care Equivalent To Hospital Care For Some Patients With Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 08-07-2010

Country Concert for Cystic Fibrosis

Patients with cystic fibrosis (CF) recover from exacerbations equally well if they are treated at home or in a hospital, according to researchers from Johns Hopkins University. Furthermore, longer treatment with antibiotics does not appear to offer any additional benefit over shorter courses...


Thank You – CF Concert supporters

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Posted by Cystic Fibrosis Country Concert | Posted in Country Concert for Cystic Fibrosis | Posted on 04-07-2010

Country Concert for Cystic Fibrosis

Just a little SHOUT OUT to the great supporters and sponsors that are helping us out this year. We know its tough economic times for everyone, and we truly appreciate everything being done to make this years event our best ever.

Please, please support our sponsors! Thank them, spend your money with them and tell them you appreciate what they do for their community.

While, I can’t list everyone’s logo right now, I do want to welcome the following NEW sponsors for 2010!

hildebrand

Slusser

steinbrenner

wilkes_barre_logo

And don’t forget, you can click HERE for all the event details and HERE to Pre-Register and save on the official ride T-Shirt!

See you in August!


Effect of Th2 type cytokines on hCLCA1 and mucus expression in cystic fibrosis airways

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Posted by Hans-Peter Hauber, Francois Lavigne, Hsiao-Ling Hung, Roy C. Levitt, Qutayba Hamid | Posted in Country Concert for Cystic Fibrosis | Posted on 01-07-2010

Country Concert for Cystic Fibrosis

Abstract: Correlations between expression of interleukin (IL)-9, the calcium-activated chloride channel hCLCA1 and mucus expression in cystic fibrosis (CF) airways have suggested a causal relationship. To verify this hypothesis mucosal tissue from upper airways of CF patients (N=5) was stimulated with the Th2 type cytokines IL-4, IL-9, or IL-13. Expression of hCLCA1 mRNA and protein as well as mucus and mucin (MUC5AC) gene expression was quantified using real time PCR, immunohistochemistry (hCLCA1) and PAS staining (mucus). Th2 type cytokines significantly increased hCLCA1 protein expression (P<0.05) whereas increase in hCLCA1 mRNA expression failed to reach statistical significance (P>0.05). Mucin protein and MUC5AC mRNA expression were not significantly changed (P>0.05). These data suggest that Th2 type cytokines may increase hCLCA1 expression in CF but may not have a significant effect on mucus expression. Therefore the role of hCLCA1 as a mediator of mucus overexpression in CF has to be questioned.


Teens Urge Congress To Help Their Siblings With Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 23-06-2010

Country Concert for Cystic Fibrosis

Teens from across the United States whose siblings have cystic fibrosis will press their elected officials in Washington, D.C., June 24, to fund drug research and increase access to clinical trials for those with rare diseases. Their goal is to speed the development of new drugs for people who need them most...


ARIKACE™ Demonstrates Sustained Benefit In The Treatment Of Cystic Fibrosis Patients Who Have Pseudomonas Lung Infections

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 19-06-2010

Country Concert for Cystic Fibrosis

Transave, Inc., reported interim results from a multi-cycle Phase II open label clinical trial in cystic fibrosis (CF) patients on its lead investigational drug, ARIKACE™ (liposomal amikacin for inhalation)...


Eurand Announces Data On Switching Cystic Fibrosis Patients With Exocrine Pancreatic Insufficiency From Unapproved PEPs To FDA-Approved ZENPEP(R)

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 18-06-2010

Country Concert for Cystic Fibrosis

Eurand Pharmaceuticals, Inc., a subsidiary of global specialty pharmaceutical company Eurand N.V...


‘Orphan Drug’ Research Offers Hope

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 03-06-2010

Country Concert for Cystic Fibrosis

In addition to their suffering, rare disease patients often have to face the harsh reality that few pharmaceutical companies will ever be able to offer new treatments for their condition because the costs of new treatments will never be recovered from such a small market. But there are ways they can be helped. The U.S...


Insight Into The Future Of Cystic Fibrosis Offered By Older Patients

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 22-05-2010

Country Concert for Cystic Fibrosis

An emerging population of middle-aged cystic fibrosis patients contains significantly more females and includes a large proportion of patients who lived for decades without a diagnosis or specialized care, according to research published by researchers at National Jewish Health...


Country Concert for Cystic Fibrosis

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 21-05-2010

Country Concert for Cystic Fibrosis

Country Concert for Cystic Fibrosis

Country Concert for Cystic Fibrosis


Mpex Pharmaceuticals Presents Positive Phase 2 Clinical Trial Results Of Aeroquin(TM) (MP-376) Treatment In Cystic Fibrosis Patients

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 20-05-2010

Country Concert for Cystic Fibrosis

Mpex Pharmaceuticals, Inc. announced the presentation of data from its Phase 2b clinical trial with Aeroquin™ (a proprietary aerosol formulation of levofloxacin, MP-376) in cystic fibrosis (CF) at the American Thoracic Society (ATS) Annual Meeting in New Orleans...


Gregory Downey, MD, Honored For Scientific Accomplishments

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Respiratory / Asthma | Posted on 19-05-2010

Country Concert for Cystic Fibrosis

Gregory Downey, MD, received the 2010 Recognition Award for Scientific Accomplishments at the American Thoracic Society's (ATS) International Conference on Monday, May 17. Dr. Downey, Executive Vice President of Academic Affairs and Professor of Medicine, Pediatrics and Immunology at National Jewish Health, has over 190 publications to his credit...


CF Foundation Announces Congressional Briefing

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 18-05-2010

Country Concert for Cystic Fibrosis

We are delighted to announce that Dr. Robert J. Beall, president and CEO of the CF Foundation 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.

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

Did you know that May is Cystic Fibrosis Awareness Month?

May is Cystic Fibrosis Awareness Month. You can help keep your members of Congress informed about the needs of people with cystic fibrosis by urging them to attend the Foundation’s congressional briefing on Thursday, May 20.


NIH Director Dr. Francis Collins talks about his dream for cystic
fibrosis and the future.
What: The Cystic Fibrosis Foundation and FasterCures invite you to a briefing that spotlights the nation’s investment in medical research at the NIH and examines how these dollars can be leveraged to create new therapies for patients and save lives.

Who:

  • Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health
  • Senators Richard J. Durbin and Richard C. Shelby
  • Robert J. Beall, Ph.D., President and Chief Executive Officer, Cystic Fibrosis Foundation
  • Moderator: Margaret Anderson, Executive Director, FasterCures / The Center
    for Accelerating Medical Solutions

When: Thurs., May 20, 2010, 10 a.m. – 11 a.m.

Where: Dirksen Senate Office Building, G-11

Why: “The Cystic Fibrosis Foundation has shown the way, has lit up the path…and what’s been learned from CF can be extrapolated, generalized, to hundreds of other diseases,” Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health

The past few decades have brought exciting scientific breakthroughs necessary to understand, diagnose, and treat many diseases. However, the ability to translate exciting advancements into treatments that can help patients severely lags behind the pace of innovation.

On average, it takes 15 years to turn a scientific discovery into a viable therapy. For the millions of Americans who live with chronic and fatal diseases, this is simply too long to wait.

Fifty years ago, people with cystic fibrosis did not live long enough to attend grade school, but today, there are more than 30 drugs in a CF drug development pipeline and the median life expectancy for someone with the disease is 37 years.

NIH Director Dr. Francis S. Collins, Dr. Robert J. Beall of the Cystic Fibrosis Foundation, and Margaret Anderson of Faster Cures will address:

  • What lessons can be learned from the cystic fibrosis successes that can map the way for other diseases?
  • How can federal investment at the NIH and other agencies be leveraged to answer important scientific questions in a way that accelerates the discovery and development of medical solutions for deadly and debilitating diseases?
  • How can we bridge the “Valley of Death” between basic science discoveries and the creation of new therapies for patients?


Aradigm Receives FDA Clearance For Clinical Trial Of Inhaled Liposomal Ciprofloxacin In Pediatric Patients With Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 07-05-2010

Country Concert for Cystic Fibrosis

Aradigm Corporation (OTCBB:ARDM) (the "Company") announced it received clearance from the U.S. Food and Drug Administration (FDA) for its inhaled liposomal ciprofloxacin Investigational New Drug (IND) application...


Cystic Fibrosis Foundation Launches National Cycling Series To Benefit Critical Research And Care

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 05-05-2010

Country Concert for Cystic Fibrosis

Thousands of cyclists will take to the streets this summer and fall as the Cystic Fibrosis Foundation launches a new cycling tour in 18 cities across the country to support research to find new therapies and a cure for cystic fibrosis. The tour series, known as ZENPEP® CF Cycle for Life begins in San Francisco on June 26. The event's title sponsor is Eurand N.V...


Making “Great Strides” in Conquering Cystic Fibrosis

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 03-05-2010

Country Concert for Cystic Fibrosis

Making “Great Strides” in Conquering Cystic Fibrosis

Saturday, May 01 2010
watch video

WILKES-BARRE, LUZERNE COUNTY – Kirby Park was filled with walkers of all ages on Saturday.

They were there with one purpose in mind — to help conquer Cystic Fibrosis. It’s a life-shortening disease that strikes 30,000 children and adults — a disease that causes great difficulties with a person’s respiratory and digestive systems. “People with cystic fibrosis in order to live a healthy life face challenges every day… treatments to clear their lungs, enzymes before they eat,” said Linda Capozello.

She is Executive Director of the Cystic Fibrosis Foundation’s Northeastern Pennsylvania Chapter. She helped organize this Great Strides walk — a fund-raiser that’s drawn about twice as many walkers as last year. “Certainly when you have a childhood illness, people do come around and are very generous and kind and supportive,” said Capozellol. Many people decided to form teams for people they know who are stricken with cystic fibrosis. Crestwood 7th Grader Bethanie Jones formed Team Macho Brothers. She rounded up some friends to walk on behalf of her two cousins who both have cystic fibrosis. “I feel bad because they don’t really have a big life span and, like, I want them to survive as long as they can,” said the Luzerne County girl. “I want them to be normal and not have to worry about it when they get older.”

Getting older wasn’t much of an option for children with cystic fibrosis a half-century ago. Few lived long enough to enter grade school. But, today, many make it into adulthood. “The average life expectancy is now 37 years of age,” said Capozello. “But we’re making wonderful strides and we’re pushing that back literally by years.”

Giving people with cystic fibrosis — and their families — reason to keep trying to find a cure — one step at a time. The goal was to raise $35,000 at the Great Strides walk. All of the money raised goes toward research and treatment of cystic fibrosis.


The Journal of Cystic Fibrosis: Sunny perspectives

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Posted by Gerd Dring | Posted in Uncategorized | Posted on 01-05-2010

Country Concert for Cystic Fibrosis

The Journal of Cystic Fibrosis is the official Journal of the European Cystic Fibrosis Society (ECFS). The ECFS is a professional organisation and has members that form a wide range of disciplines including scientists, physicians, nurses and allied health professionals. The mission of ECFS is to facilitate the acquisition and sharing of knowledge and the improvement of patient care in all aspects of CF. An important instrument for this mission is the Journal. After nearly a decade, the Journal is now a well established source of valuable scientific and clinical information for individuals all over the world, interested in this hereditary disease. Cystic Fibrosis is a very complex disease which is mirrored by the high diversity of topics which are covered in the Journal (). Articles are published online and in the six yearly issues of the Journal or supplements.


Pigs Provide Clues On Cystic Fibrosis Lung Disease

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 29-04-2010

Country Concert for Cystic Fibrosis

Aided by a new experimental model, scientists are a step closer to understanding how cystic fibrosis (CF) causes lung disease in people with the condition. The findings, published online April 28 in the journal Science Translational Medicine, could help improve treatments for lung disease, which causes most of the deaths and disability among people with CF...


New Drug May Treat Cystic Fibrosis, Other Diseases Caused By ‘Nonsense Mutations’

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 27-04-2010

Country Concert for Cystic Fibrosis

Inherited diseases such as cystic fibrosis can be caused by genetic "nonsense mutations" that disrupt the way human cells make proteins. David Bedwell, Ph.D., a professor in the University of Alabama at Birmingham (UAB) Department of Microbiology, says scientists are now closer to producing drugs that will fix this disruption and drastically improve treatment of genetic disease...


Thank You for making the Shalimar a Succcess!

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 25-04-2010

Country Concert for Cystic Fibrosis

THANK YOU SO EVER MUCH to all who came to the Shalimar last night in support of the Team Pounding the Pavement for Paige ,Great Strides Cystic Fibrosis Fundraiser.

We had a GREAT turnout and support for CF and truly appreciate everyone’s generosity….Thank you to all who donated raffle prizes and gift certificates,and to the Shalimar….Thank you also to those who couldn’t make it but told a friend ,spread the word and kept us in your thoughts….The fundraiser was a huge success….please remember that AUG 22 is the large fund raising benefit, the 3rd Annual Country Concert for CF & Motorcycle Ride…This year we are kicking it up a notch with KARTUNE and the other Great Bands are Farmers Daughter,the Tim Johnson Band,Crossfire, Jenne Zano,Big Carl & the MudPond Boys,Crystal Martinez we are going to have nonstop live great music and so much stuff for you to do …look for all of our ads and updates and of course…www.cfconcert.com has all the info….Thank you very much Again….Carol Davis   (member of “Team Pounding the Pavement for Paige”)


Join Us!

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 22-04-2010

Country Concert for Cystic Fibrosis

Saturday, April 24th at the Shalimar in Mountain Top, PA for a CF Great Strides Fundraiser. Help us raise money for the upcoming walk at Kirby Park in Wilkes-Barre.

$5 donation at the door

Music by DJ JT and Carol

Basket raffles, 50/50, jello shots and fun all night from 8 p.m. to 1 a.m.

Hosted by “Team Pouding the Pavement for Paige”

IMG_7299


Infliximab Successfully Treats Cystic Fibrosis And Crohn’s Disease

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 20-04-2010

Country Concert for Cystic Fibrosis

Cystic fibrosis (CF) is the most common life-threatening autosomal recessive disease in Caucasian children; it has an incidence of 1 case in every 2500 children born alive...


What Is Bronchiectasis (Bronchiectasia)?

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Respiratory / Asthma | Posted on 17-04-2010

Country Concert for Cystic Fibrosis

Bronchiectasis, also known as bronchiectasia, is a lung condition that causes persistent cough and excess phlegm (sputum); it is defined by localized, irreversible dilation (widening) of part of the bronchial tree - the airways widen, become flabby and scarred. Bronchiectasis, along with emphysema, bronchitis and cystic fibrosis is classified as an obstructive lung disease...


Gene Testing: Patents Block Competition, Slow Innovation

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Genetics | Posted on 15-04-2010

Country Concert for Cystic Fibrosis

Exclusive licenses to gene patents, most of which are held by academic institutions and based on taxpayer-funded research, do more to block competition in the gene testing market than to spur the development of new technologies for gauging disease risk, say researchers at the Duke Institute for Genome Sciences & Policy (IGSP)...


Exploring Treatments For Blood Disorders And Lung Diseases

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Blood / Hematology | Posted on 14-04-2010

Country Concert for Cystic Fibrosis

Stem cell scientists at The University of Texas Health Science Center at Houston (UTHealth) were awarded stimulus grants totaling almost $2 million to research experimental treatments for blood disorders and inherited lung diseases affecting children...


Join us at the Shalimar!

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 12-04-2010

Country Concert for Cystic Fibrosis

Saturday, April 24th at the Shalimar in Mountain Top, PA for a CF Great Strides Fundraiser. Help us raise money for the upcoming walk at Kirby Park in Wilkes-Barre.

$5 donation at the door

Music by DJ JT and Carol

Basket raffles, 50/50, jello shots and fun all night from 8 p.m. to 1 a.m.

Hosted by “Team Pouding the Pavement for Paige”

paige1scan


Pounding the Pavement for Paige – Cystic Fibrosis Great Strides

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 11-04-2010

Country Concert for Cystic Fibrosis

It’s that time of year again for the cystic fibrosis great strides walk. Thank you to everyone who has donated in the past. Our walk is on May 1st at kirby park, and any one wishing to donate online can click on the link. This is a great cause very near to my heart as we walk in honor of my niece Paige, so any contributions are greatly appreciated!

Cystic Fibrosis Foundation
www.cff.org

The weather is finally getting warmer, flowers are in bloom, summer is on the horizan, and The CF Great Strides walk is already approacxhing. I want to thank everyone who has donated in the past, your contributions are greatly appreciated. …


Cystic Fibrosis Foundation’s Facebook Page Surpasses 60,000 Fans – Double The Number Of Patients In The Country

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 28-03-2010

Country Concert for Cystic Fibrosis

The Cystic Fibrosis Foundation announced that its Facebook page has surpassed 60,000 fans - double the number of people in the United States who have cystic fibrosis, a rare and fatal genetic disease. This rapid growth may reflect the need for people with CF to come together and exchange information in a setting that does not put their health at risk...


An overview of international literature from cystic fibrosis registries: 2. Neonatal screening and nutrition/growth

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Posted by Donatello Salvatore Roberto Buzzetti Ermanno Baldo Maria Pia Forneris Vincenzina Lucidi Daniela Manunza Italo Marinelli Barbara Messore Anna Silvia Neri Valeria Raia Maria Lucia Furnari Gianni Mastella | Posted in Uncategorized | Posted on 01-03-2010

Country Concert for Cystic Fibrosis

Abstract: Background: This is the second article related to a review of the literature based on data from national cystic fibrosis (CF) registries up to June 2008 and covering a total of 115 studies. It focuses on two topics: neonatal screening (NS) and nutritional status, with particular reference to growth.Methods: Ten papers meeting the inclusion criteria were found on the topic of NS and its impact on the course of the disease, and were analyzed according to a dedicated grid. The issue of nutrition was addressed by 14 studies, analyzed according to similar criteria.Results: Most of the studies report benefits of early diagnosis by NS, albeit to variable degrees. The benefits were assessed in terms of better nutritional status and growth, but also in terms of lower overall morbidity rate as compared to subjects diagnosed by symptoms. The main biases of these studies, which partly undermine the validity of their results, are also analyzed.A part of our analysis on nutrition/growth is dedicated to the identification of the most suitable parameters to define malnutrition: in children older than two years the body mass index percentile (BMIp) appears to be the most sensitive and significantly associated with respiratory function. Better nutritional status and satisfactory growth appear to be associated with better lung function and lower risk of death. The relationship between nutritional status and socio-economic status is also of interest.Conclusions: CF registry studies support the outcome of cohort observational studies i.e. that pre-symptomatic early diagnosis is beneficial, especially in terms of nutritional status and growth. Studies on nutrition indicate that good nutritional status is associated with better respiratory function and prognosis. Regarding methods, the need emerged to manage potential biases of this kind of non randomized studies, resorting to suitable statistical techniques, such as matching and stratification and, above all, to multivariate methods able to provide estimates adjusted for the main covariates tested.


U.S. Food And Drug Administration Approves Cayston(R) For The Improvement Of Respiratory Symptoms In Cystic Fibrosis Patients

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 27-02-2010

Country Concert for Cystic Fibrosis

Gilead Sciences, Inc. (Nasdaq:GILD) announced that the U.S. Food and Drug Administration (FDA) has granted marketing approval for Cayston(R)(aztreonam for inhalation solution) as a treatment to improve respiratory symptoms in cystic fibrosis (CF) patients with Pseudomonas aeruginosa (P. aeruginosa)...


Aradigm Doses First Patient In Its Second Phase 2b Clinical Trial Of Inhaled Liposomal Ciprofloxacin In Bronchiectasis Patients

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Respiratory / Asthma | Posted on 25-02-2010

Country Concert for Cystic Fibrosis

Aradigm Corporation (OTCBB:ARDM) (the "Company") announced that it dosed the first patient in the U.S...


FDA approves new drug for CF

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 24-02-2010

Country Concert for Cystic Fibrosis

We have a new antibiotic in the arsenal to help fight the life-threatening infections associated with cystic fibrosis.

Yesterday, 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.

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 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.

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians.

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.

To help continue our progress in the fight against CF, please consider making a tax-deductible donation to the CF Foundation today.

Thank you for all you do.

Sincerely,

Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org


Third Annual Cystic Fibrosis Country Concert

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 20-02-2010

Country Concert for Cystic Fibrosis

Third Annual Cystic Fibrosis Country Concert

Please Save the Date for the 3rd Annual CF Concert & Motorcycle Ride on Sunday AUG 22,2010 at the American Legion Post 781 Grounds in Mountain Top,Pa (approx 1mile off of the Nuangola Exit on 81 or 3 miles from RT 309)… Concert Starting at 1pm.. General Admission to CONCERT only $5.00 Donation/Children under 12 FREE.. In addition to the GREAT BANDS, the Concert will also feature:

  • the National Guard, Nascar
  • a Classic Car Show Sponsord by RACE Car club
  • Messages by McCain School of Mesages
  • Free Petting Zoo for the kids
  • Basket Raffles/Tricky Trays
  • Good Food at Reasonable Prices
  • Great Sponsors & vendors with free giveaways…

Beer,Soda & Water only $1.00…So much to do we can’t fit it on the page CONCERT WILL FEATURE an Up CLose and Personal Concert Sponsored by FROGGY 101

Farmer's Daughter

Farmer's Daughter

Crystal Martinez

Crystal Martinez

Big Carl & the Mudpond Boys

Big Carl & the Mudpond Boys

…and more to be added in the next few weeks.

MOTOR CYCLE RIDE INFO:

$20 per person per RIDER..

$10 per person for PASS

Both include a delicious PIG ROAST LUNCH at conclusion of ride at the American Legion MT Top… Sign-In starts at 9:30am -11:30 at the KMART parking lot on RT 309 WB.. Donuts, coffee and water provided by Dunkin Donuts WB/& Paiges Family… Ride leaves promptly from KMART parking lot at 11:30 with a 65 mile ride that will go 309 to 437 through Freeland and the Conyingham Valley and the ride concludes at the American Legion Post 781 where your lunch and a great day awaits you… First 200 to arrive at legion will also recieve Thank you bags…

Hope To See You There!


Cases Of Some Genetic Diseases Appear To Decline As Prenatal Testing, Embryonic Screenings Increase

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Pregnancy / Obstetrics | Posted on 18-02-2010

Country Concert for Cystic Fibrosis

As prenatal and embryonic genetic testing has become more widespread in the U.S., the number of infants with certain inheritable diseases -- such as cystic fibrosis, Tay-Sachs and familial dysautonomia -- has declined, according to an Associated Press review of research and interviews with genetics experts, the AP/Seattle Times reports...


Low-Cost DNA Test To Pinpoint Risk Of Inherited Diseases

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Genetics | Posted on 17-02-2010

Country Concert for Cystic Fibrosis

An inexpensive, fast, accurate DNA test that reveals a person's risk of developing certain diseases is expected to become a reality, thanks to technology developed at the University of Edinburgh. Scientists have developed a method of pinpointing variations in a person's genetic code at critical points along the DNA chain. The technique could be used to analyse DNA in a drop of saliva...


Defective Signaling Pathway Sheds Light On Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 15-02-2010

Country Concert for Cystic Fibrosis

In a study that could lead to new therapeutic targets for patients with the cystic fibrosis, a research team from the University of California, San Diego School of Medicine has identified a defective signaling pathway that contributes to disease severity...


Tell Congress to Keep Clinical Trials Bill on its Agenda

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Posted by Paige | Posted in Cystic Fibrosis News | Posted on 12-02-2010

As you may know, last week we announced encouraging results from Vertex Pharmaceuticals Incorporated‘s Phase 2a trial of VX-809, one of the first investigational drugs aimed at treating the underlying causes of cystic fibrosis. Learn more about this exciting advancement.The remarkable progress of VX-809 is a reminder of why it is so important to remove barriers that prevent people with CF from participating in clinical trials. Passing the “Improving Access to Clinical Trials Act of 2009” will allow people with CF who are on public benefits to participate in important research without losing their health coverage. We continue to work with Congressional supporters to chart the best path forward for the bill. There are two options to pass the bill:

Option #1: On its own

Non-controversial, bi-partisan and no-cost legislation like the clinical trials bill may be considered under special procedural rules. Thanks to your hard work, 110 members of the House, and eight members of the Senate have signed on as co-sponsors, meeting the requirements to provide the bill the opportunity to advance on its own.

Option #2: As part of a health care reform bill

Despite the shift away from health reform in past weeks, our sponsors – several of whom are key negotiators on health reform – continue to consider it as an option and the best opportunity to move the bill sooner rather than later.

Read more about what H.R. 2866 would do.

What You Can Do Today

The bill has two viable opportunities because you made it clear to your members of Congress that this is a priority for you and should be for them as well.

Ask your members of Congress to keep the “Improving Access to Clinical Trials Act” on their agenda until it passes.

Looking to do more to help fight CF? Sign up for a GREAT STRIDES walk!This spring, take steps to cure cystic fibrosis by signing up for a GREAT STRIDES walk. Join tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2009, nearly $35 million was raised to support vital CF programs. Register online today!

Thank you for your support!

Mary B. Dwight
Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org

MAKE AN IMPACT ON CF

SPEAK OUT
Get Started

GET INVOLVED
Sign up

INSPIRE ACTION
Recruit friends and family

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To learn more about the Cystic Fibrosis Foundation, visit www.cff.org.

Cystic Fibrosis Foundation Receives $521,000 From BJ’s Restaurants, Inc., As Part Of Long-Term Commitment To Fight Life-Threatening Disease

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 08-02-2010

Country Concert for Cystic Fibrosis

As part of a steadfast commitment to finding a cure for cystic fibrosis, BJ's Restaurants, Inc. donated $521,000 to the Cystic Fibrosis Foundation in 2009 for research, care and education programs. BJ's has been involved with the Foundation since 1998 and is one of its largest and most loyal corporate supporters...


CREON(R) (pancrelipase) Delayed-Release Capsules Significantly Improves Fat Absorption In Children With Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 06-02-2010

Country Concert for Cystic Fibrosis

Solvay Pharmaceuticals, Inc...


New ground in our work to advance the development of new cystic fibrosis treatments

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Posted by Paige | Posted in Cystic Fibrosis News | Posted on 04-02-2010

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.

Learn more about this study.

Without your support, this milestone would simply not be possible.  Your contributions help us build hope for the future and continue to advance vital cystic fibrosis research.

If you have CF, you can also help by participating in a clinical trial. Visit the Foundation?s Web site to learn more about clinical trials and to find out how you can get involved.

Thank you for your commitment to the fight against CF. Together, we are making a difference!

Cystic Fibrosis Foundation Volunteer To Carry Torch For Vancouver 2010 Olympic Winter Games

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 18-01-2010

Country Concert for Cystic Fibrosis

One of the Cystic Fibrosis Foundation's most active volunteers will carry the Olympic Torch today in Calgary as it makes its way to Vancouver and the Opening Ceremony for the 2010 Olympic Winter Games. Liz Burns, incoming board president for the Foundation's Georgia Chapter, has helped raise more than $600,000 for CF research, care and education programs...


Biodegradable Particles Can Bypass Mucus, Release Drugs Over Time

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 06-01-2010

Country Concert for Cystic Fibrosis

Johns Hopkins University researchers have created biodegradable nanosized particles that can easily slip through the body's sticky and viscous mucus secretions to deliver a sustained-release medication cargo...


Measuring and improving respiratory outcomes in cystic fibrosis lung disease: Opportunities and challenges to therapy

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Posted by Edith T. Zemanick J. Kirk Harris Steven Conway Michael W. Konstan Bruce Marshall Alexandra L. Quittner George Retsch-Bogart Lisa Saiman Frank J. Accurso | Posted in Uncategorized | Posted on 01-01-2010

Country Concert for Cystic Fibrosis

Abstract: Cystic fibrosis (CF) is a life-shortening disease with significant morbidity. Despite overall improvements in survival, patients with CF experience frequent pulmonary exacerbations and declining lung function, which often accelerates during adolescence. New treatments target steps in the pathogenesis of lung disease, such as the basic defect in CF (CF Transmembrane Conductance Regulator [CFTR]), pulmonary infections, inflammation, and mucociliary clearance. These treatments offer hope but also present challenges to patients, clinicians, and researchers. Comprehensive assessment of efficacy is critical to identify potentially beneficial treatments. Lung function and pulmonary exacerbation are the most commonly used outcome measures in CF clinical research. Other outcome measures under investigation include measures of CFTR function; biomarkers of infection, inflammation, lung injury and repair; and patient-reported outcomes. Molecular diagnostics may help elucidate the complex CF airway microbiome. As new treatments are developed for patients with CF, efforts should be made to balance treatment burden with quality of life. This review highlights emerging treatments, obstacles to optimizing outcomes, and key future directions for research.


Make their dreams come true

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Posted by Country Concert for Cystic Fibrosis | Posted in Cystic Fibrosis | Posted on 31-12-2009

Country Concert for Cystic Fibrosis


Disinfectants May Help Superbugs Resist Antibiotics

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Posted by Cystic Fibrosis News From Medical News Today | Posted in MRSA / Drug Resistance | Posted on 29-12-2009

Country Concert for Cystic Fibrosis

Using disinfectants could help superbug bacteria become resistant not only to the disinfectant itself but to antibiotics, even if they have not been exposed to them, according to a new study from Ireland: the findings could be important step in the fight to prevent superbugs spreading in hospitals...


$1.4 Million Grant Received By Boston University School Of Medicine

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 25-12-2009

Country Concert for Cystic Fibrosis

Boston University School of Medicine's (BUSM) Pulmonary Center has received a two-year $1.4 million grant from the National Heart, Lung, and Blood Institute to derive stem cells and lung progenitors from patients with lung disease...


Carrier Screening Associated With Decrease In Incidence Of Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 23-12-2009

Country Concert for Cystic Fibrosis

An increase in the number of screened carriers for cystic fibrosis (CF) was associated with a decrease in the number of children born with CF in northeast Italy, according to a study in the December 16 issue of JAMA. Some studies have suggested that there has been a progressive decrease in the incidence of newborns with CF in some areas...


Cystic Fibrosis Protein’s Secret Life Revealed, US Study

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 22-12-2009

Country Concert for Cystic Fibrosis

Researchers have made an important discovery about the secret life of the defective protein that causes cystic fibrosis: while scientists already knew that CFTR protein regulates the acid-alkali balance in cells, what they didn't know, until this study revealed it, was what turns that ability on and off...


Improved Understanding Of The Defective Protein That Causes Cystic Fibrosis

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Posted by Cystic Fibrosis News From Medical News Today | Posted in Cystic Fibrosis | Posted on 18-12-2009

Country Concert for Cystic Fibrosis

A team of researchers studying the protein that, when defective or absent, causes cystic fibrosis (CF) has made an important discovery about how that protein is normally controlled and under what circumstances it might go awry...