Posted by Cystic Fibrosis Country Concert | Posted in Country Concert for Cystic Fibrosis | Posted on 23-07-2010
Country Concert for Cystic Fibrosis
Country Concert for Cystic Fibrosis
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:
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!
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...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!
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!
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.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...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)...Country Concert for Cystic Fibrosis
Eurand Pharmaceuticals, Inc., a subsidiary of global specialty pharmaceutical company Eurand N.V...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...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
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...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...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:
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:
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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...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...Country Concert for Cystic Fibrosis
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.
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.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...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...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”)
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”
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...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...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)...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...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”
Country Concert for Cystic Fibrosis
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
Country Concert for Cystic Fibrosis
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:
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
![]() Big Carl & the Mudpond Boys |
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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…
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.
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
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To learn more about the Cystic Fibrosis Foundation, visit www.cff.org.
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.
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!