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CFF In the News

Here is a selection of news articles about the Foundation that have appeared in prominent media outlets. For more information, contact Laurie Fink, national director of media relations at the Cystic Fibrosis Foundation.


07/16/14   Wall Street Journal - Costly Vertex Drug Is Denied, and Medicaid Patients Sue
Vertex Pharmaceuticals Inc.'s $300,000-a-year cystic fibrosis drug has sparked a legal battle in Arkansas, where the state's Medicaid program is restricting access to the expensive therapy.
06/24/14   Forbes.com - In A Victory For Gene Research, Vertex Drug Combo Clears Lungs Clogged By Cystic Fibrosis
In the war against genetic disease, scientists just gained some important ground. This morning, Vertex Pharmaceuticals of Boston is announcing that a combination of two drugs improved the lung capacity of patients with the deadly disease cystic fibrosis, helping them gain weight and preventing infections that would have landed them in the hospital or required antibiotics.
06/24/14   The Boston Globe - Vertex’s cystic fibrosis drugs have promising trial
Results of a clinical trial released Tuesday showed a combination of two cystic fibrosis drugs developed by Boston’s Vertex Pharmaceuticals Inc. helped people with the deadly disease breathe more easily, raising hopes the treatment could be on the market by late next year and sending the company’s stock soaring.
04/02/14   Forbes.com - Who will own the future of healthcare?
Not long ago, consumers could access health information about as easily as they could access plutonium. This is changing rapidly in the information age. As a result, consumers—rather than doctors, government, insurers, hospitals, or healthcare companies—will own the Healthcare Century. Any healthcare institution that ignores this trend does so at its peril.
03/25/14   BioNews Texas - Cystic Fibrosis Philanthropy, Community Action Could Fuel Future Drug Discovery
Thanks to a few bad actors and plenty of media bias, drug development and the pharmaceutical industry is often thought of by consumers as a cold, heartless industry that, rather than being patient-focused, puts profit and revenues ahead of treating and curing diseases effectively. While there certainly a few stories that support such claims, drug discovery and development is, at its fundamental levels, an earnest enterprise where the ultimate aim is to research, develop and commercialize therapies that effectively treat or cure a disease.
03/20/14   BioNews Texas - Cystic Fibrosis Patients Await Word On Results For Vertex’s Experimental Drug Lumacaftor
Orphan disease drug developers such as Vertex Pharmaceuticals operate differently from big pharma: they often take one or two “best shots” at diseases where there are substantial unmet needs, pour all of their resources into developing a winning molecule that actually works, and either succeed or fail based on the clinical trial results.
03/16/14   The New York Times - Billionaires With Big Ideas Are Privatizing American Science
Last April, President Obama assembled some of the nation’s most august scientific dignitaries in the East Room of the White House. Joking that his grades in physics made him a dubious candidate for “scientist in chief,” he spoke of using technological innovation “to grow our economy” and unveiled “the next great American project”: a $100 million initiative to probe the mysteries of the human brain.
11/25/13   The Washington Post - Donald C. Wood: Mixing business with charity to fight cystic fibrosis
In the summer of 2010, with the real estate industry in tatters, the owners of the second largest shopping mall company in America came knocking on Donald C. Wood’s door in Rockville.
11/19/13   The Wall Street Journal - Genetic Testing Leaves More Patients Living in Limbo
The expanding use of genetic testing is having an unforeseen consequence: More people are being told they have genes for potentially fatal diseases but don't show any symptoms.
11/18/13   The Boston Globe - Cystic fibrosis patients losing a connection
Cystic fibrosis has not been easy for Katie Lockwood. But, along with a regimen of chest physical therapy to keep the sticky mucus from building up in her lungs, frequent doctor visits, and the emotional burden of an uncertain future, the disease also brought with it a community. When she was 4, Lockwood spent a week at a summer camp just for CF patients. While growing up, she attended at least five CF fund-raisers each year, enjoyed annual ice-skating and dance parties to raise money for research, learned public speaking at a young age, even met actress Rosie O’Donnell.
09/30/13   The Atlantic - Beating Cystic Fibrosis
It started out like any other day for Emily Schaller. A good hair day, even. And then, there it was: a single gray hair.Plucking the hair and others that soon followed was more than just humbling rite of passage for Schaller. On the cusp of turning 30, it meant that she had, for the time being, beat the odds stacked against her since she was diagnosed with cystic fibrosis (CF) as an infant.
08/23/13   Discover Magazine - Doorway to a Cure
For the first time in over a decade, a striking silence fills the Cheevers’ barn-style home in North Andover, Mass. The deep, rumbling cough that plagued sisters Laura, 14, and Cate, 12, every night of their lives, leaving them exhausted and weak, has finally stopped.
04/23/13   The Boston Globe - Biopharmaceutical industry faces a shift in dynamics
As more than 15,000 executives and economic development officials gathered here Monday for the opening day of the annual Biotechnology Industry Organization convention, the talk was less about bringing safe and effective drugs to market than about improving health, keeping patients out of the hospital, and reining in costs in the United States and globally.
04/19/13   Forbes - "Vertex Scores A Big Win With Its Cystic Fibrosis Experiment"
In a development that greatly bolsters its standing in the cystic fibrosis market, Vertex Pharmaceuticals late yesterday released data showing a combination of its existing Kalydeco treatment and an experimental medication called VX-661 greatly improved patient breathing.
01/02/13   NPR - "Drug Fulfills Promise Of Research Into Cystic Fibrosis Gene"
The promise of genetic medicine is beginning to be fulfilled, but it's been a long, hard slog.
12/27/12   Forbes - "The Most Important New Drug Of 2012"
The Food and Drug Administration looks set for a great 2012; with a few days left to go, it has approved 40 new drugs and vaccines, one of the most impressive totals ever, according to data from Pharmaceutical Approvals Monthly and FDA press releases.
12/07/12   Forbes - "Guest Post: Pfizer Research Boss On Why He's Working With The Cystic Fibrosis Foundation"
The biomedical R&D model is changing for the better, and this was evident at the Partnering for Cures conference held in NY this week.
11/19/12   Xconomy - "Pfizer, Cystic Fibrosis Foundation in $58 Million Pact "
The Cystic Fibrosis Foundation says it has agreed to invest up to $58 million over six years to expand its drug development partnership with New York-based Pfizer, in an attempt to speed up the development of drugs that will treat people with the most common mutation associated with the deadly lung disease.
08/08/12   Denver Business Journal - "Solutions: Venture philanthropy a new cure for deadly diseases"
Once certain that he would die young, the man born with the deadly disease now dreams of growing old.
06/20/12   The Boston Globe - "Patients driving direction of new drug research"
Scott Martin’s son was still a newborn when nurses began to suspect the baby had hemophilia. The diagnosis sent Martin and his wife into a tailspin for about six months - then they began searching for treatment.
05/10/12   Boston Herald - "'Game-changer’ in fight against cystic fibrosis"
A locally waged battle against cystic fibrosis has yielded an experimental drug combination that is giving new hope to families affected by a disease that historically has meant death at an early age.
05/07/12   Forbes - "A One-Two Punch Against Cystic Fibrosis, And Maybe Someday Other Diseases Too"
New data on an experimental drug combination being developed by Vertex Pharmaceuticals of Cambridge, Mass., should give hope to tens of thousands of people suffering from cystic fibrosis, the deadly lung disease that afflicts 70,000 people worldwide and kills most of them in their 20s.
04/21/12   The Lancet - "Promising new era dawns for cystic fibrosis treatment"
The recent approval of a new drug and the start of a phase 2 gene therapy trial are creating excitement about future treatment possibilities for people with cystic fibrosis.
04/21/12   The Economist - "All together now: Charities Help Big Pharma"
The Economist spotlights the Foundation’s success in spurring development of new drugs for cystic fibrosis.
03/06/12   Nature Medicine - "Straight Talk with...Robert Beall"
'Venture philanthropy' has become a buzz term in the nonprofit sector over the past decade, but the concept was completely new to disease-focused charities when the Cystic Fibrosis Foundation decided to give it a try in 1998.
02/10/12   Forbes - "Turning loss into hope, family offers inspiration -- and a few lessons about drug discovery"
A poignant story in the Boston Globe describes how the O’Donnell family of Boston channeled their love of a son, Joey, who died tragically at the age of 12 from cystic fibrosis, into a successful mission to develop impactful new treatments for this terrible affliction.
02/09/12   The Boston Globe - "Driven by loss, father inspires tireless pursuit of a cure"
It would have been hard to imagine that any good could ever follow that Sunday afternoon at Massachusetts General Hospital when years had dwindled to months and months had given way to minutes and Joe and Kathy O’Donnell held their only child, Joey, while he shut his eyes, drew a final, quiet breath, and died.
02/01/12   NPR’s Morning Edition - "Cystic Fibrosis Drug Wins Approval"
The Food and Drug Administration has approved the first drug that can treat the underlying cause of cystic fibrosis.
02/01/12   Nature.com - "US approves landmark cystic fibrosis drug"
It has taken nearly 23 years, but a drug that targets the cause of cystic fibrosis will soon be available for patients.
01/31/12   The Boston Globe - "Vertex’s Kalydeco drug approved for rare form of cystic fibrosis"
In a big win for Cambridge-based Vertex Pharmaceuticals, the US Food and Drug Administration today approved the company’s drug Kalydeco (ivacaftor) to treat a rare form of cystic fibrosis.
01/31/12   Reuters - "FDA approves Vertex cystic fibrosis drug, shares jump"
Health regulators approved Vertex Pharmaceuticals' Kalydeco, the first drug designed to treat the underlying cause of cystic fibrosis, a rare genetic disease.
01/31/12   The New York Times - "F.D.A. Approves New Cystic Fibrosis Drug"
The first drug that treats an underlying cause of cystic fibrosis, rather than just the symptoms, was approved by the Food and Drug Administration on Tuesday, more than 22 years after the gene responsible for the disease was first identified.
01/31/12   CNBC.com - "FDA approves Vertex cystic fibrosis drug, shares jump"
Health regulators approved Vertex Pharmaceuticals' Kalydeco, the first drug designed to treat the underlying cause of cystic fibrosis, a rare genetic disease.
01/31/12   Bloomberg - "Vertex Wins Approval for Drug to Treat Mutation Linked to Cystic Fibrosis"
Vertex Pharmaceuticals Inc. (VRTX) won approval of the first drug to treat the underlying cause of cystic fibrosis.
11/13/11   ABC World News Tonight - “Sisters' Story: Medical breakthrough saves girls with rare debilitating disease”
11/02/11   CBSNews.com - "New cystic fibrosis drug shown promising"
An experimental drug is showing great promise against cystic fibrosis, raising hopes that it offers effective treatment to some people who have the life-threatening illness.
11/02/11   ABCNews.com - "Sisters Thrive on Experimental Cystic Fibrosis Drug"
An experimental drug called ivacaftor has transformed life for two Massachusetts sisters born with cystic fibrosis, a genetic disease that frequently interrupted their schoolwork and extracurricular activities by turning simple colds and viruses into potentially life-threatening lung infections that slowly reduced their ability to breathe freely.
11/02/11   The Los Angeles Times - "Cystic fibrosis drug ivacaftor offers patients new hope"
All her life, Lindsay Shipp knew that she was dying.
10/20/11   The Wall Street Journal Health Blog - "Not Just a Cheerleader: Foundation Helped Drive Cystic Fibrosis Research"
The WSJ reports today on the two-decade quest to develop drugs for cystic fibrosis following the discovery of the gene responsible for the respiratory disease.
10/20/11   The Wall Street Journal - "Gene Discovery Was Only First Step"
More than two decades after scientists identified the gene responsible for cystic fibrosis, drug makers are finally edging closer to new treatments — a long journey that underscores the challenges of translating genetic discoveries into actual drugs.
07/20/11   Forbes - "A Drug Of Your Own"
In May 2001 a 33-year-old scientist named Fredrick Van Goor showed up for his first day of work at a biotechnology company that had just been sold to a rival.
07/20/11   Nature - "Charities seek cut of drug royalties"
Early next year, a drug for cystic fibrosis is expected to come before the US Food and Drug Administration for approval.
05/06/11   NPR’s: CommonHealth - "Special Report: New Cystic Fibrosis Drug Brings Gift Of A Future"
The snowdrifts towered before her, taller than she was, dumped by yet another of last winter’s blizzards.
03/17/11   Bloomberg Businessweek - "Vertex's Treatment for Cystic Fibrosis"
For the better part of two decades, Emily Schaller could barely take a deep breath without lapsing into coughing fits.
03/04/11   The Boston Globe - "Hope is in the pipeline"
People who suffer from relatively rare diseases deal with some cold facts of life.
02/23/11   Forbes - "Vertex May Make History With Cystic Fibrosis Drug"
In a potentially historic victory, a drug targeted to a specific genetic defect has improved the ability of cystic fibrosis patients to exhale.
02/23/11   The New York Times - "Trial Shows Cystic Fibrosis Drug Helped Ease Breathing"
The gene responsible for cystic fibrosis was discovered in 1989.
02/23/11   Boston’s NPR: Here & Now - "Drug Offers New Hope For People With Cystic Fibrosis"
The Cystic Fibrosis Foundation and Vertex Pharmaceuticals of Cambridge, Mass. have announced a successful trial for a new drug that treats the underlying cause of cystic fibrosis.
07/19/10   U.S. News - "A 'Best' Hospital for Cystic Fibrosis Kids"
Waiting to be ushered into an outpatient examination room at Cincinnati Children's Hospital Medical Center, Alicia Lang doesn't chatter on like most 18-year-old girls.
12/21/09   The New York Times - "Tool in Cystic Fibrosis Fight: A Registry"
In the 1950s, children with cystic fibrosis usually died before they reached kindergarten age, their airways choked with mucus by a genetic disorder that disrupts their ability to clear infections from their lungs.

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.