Vitamin D may be an effective therapy to treat and even prevent allergy to a common mold that can cause severe complications for patients with cystic fibrosis and asthma, according to researchers from Children's Hospital of Pittsburgh of UPMC, the University of Pittsburgh School of Medicine and Louisiana State University School of Medicine. Results of the study, led by Jay Kolls, M.D., Ph.D...
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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...
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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...
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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)...
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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...
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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...
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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...
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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?
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?
Written by Country Concert for Cystic Fibrosis in: Cystic Fibrosis |
Urge Your Senators to Pass the “Improving Access to Clinical Trials Act” Thanks to your hard work, the Improving Access to Clinical Trials Act now has more than 120 cosponsors in the House of Representatives! Your efforts have gotten us one step closer to helping new therapies for CF and other diseases move swiftly from the research stage into the hands of patients who need them.
However, we’re not done yet. Only 10 Senators have signed on to support this bipartisan bill, and we’re going to need a lot more to push the Improving Access to Clinical Trials Act across the finish line.
It’s up to you to ensure that both of your Senators are on board! Your efforts to get support for this bill in the Senate are more critical than ever.
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...
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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...
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Making “Great Strides” in Conquering Cystic Fibrosis
Saturday, May 01 2010
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.
Written by Country Concert for Cystic Fibrosis in: 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$5.00Donation/Children under 12 FREE..visit http://CFConcert.com for more details!
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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...
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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...
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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”)
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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”
Written by Country Concert for Cystic Fibrosis in: 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...
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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”
Written by Country Concert for Cystic Fibrosis in: 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!
The weather is finally getting warmer, flowers are in bloom, summer is on the horizon, and The CF Great Strides walk is already approaching. I want to thank everyone who has donated in the past, your contributions are greatly appreciated. …
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...
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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)...
Written by Cystic Fibrosis News From Medical News Today in: 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
Written by Country Concert for Cystic Fibrosis in: 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:
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 pageCONCERT WILL FEATURE an Up CLose and Personal Concert Sponsored by FROGGY 101.
Kartune
Crossfire
Tim Johnson Band
Jeanne Zano
Farmer's Daughter
Crystal Martinez
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…
In case you missed it last year, here is Crystal Martinez’s performance:
Hope To See You There!
Written by Country Concert for Cystic Fibrosis in: 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...
Written by Cystic Fibrosis News From Medical News Today in: Cystic Fibrosis |
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.
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
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...
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by Raelene
