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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.


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.
04/24/09   The New York Times - "A Brighter Outlook for Cystic Fibrosis Patients"
It isn’t easy to cure a genetic disease.
11/12/08   The New York Times - "Taking Science Personally"
A few years after Michael J. Fox revealed that he had Parkinson’s disease, he attended the annual charity auction for the Robin Hood Foundation, a New York philanthropy financed largely from donations by wealthy hedge fund managers.
09/15/08   Forbes - "Patient Power"
Every crash and thump of Emily Schaller's drumsticks is a medical victory.
04/03/08   BusinessWeek - "A Healthy Gamble for Cystic Fibrosis"
Ten years ago, Dr. Robert Beall worried that an opportunity to develop new drugs for cystic fibrosis patients was being squandered.
12/19/07   Pharmaceutical Approvals Monthly - "Breath Of Fresh Air For Cystic Fibrosis Drug Pipeline"
The outlook for cystic fibrosis drug development now is “a very different story than even five years ago,” according to Cystic Fibrosis Foundation President Robert Beall.
08/13/07   The Boston Globe - "$22m to Help Develop Drug for Cystic Fibrosis"
The Cambridge biotechnology firm FoldRx Pharmaceuticals Inc. will receive $22 million from the Cystic Fibrosis Foundation to develop and commercialize drugs aimed at treating the fatal genetic disease, a disorder of the lungs and digestive system that afflicts 70,000 people worldwide.
05/07/07   Chemical & Engineering News - "Sowing Seeds of Cures"
In 1989, when scientists found the defective gene that causes cystic fibrosis, it seemed that a cure, or at least an array of better treatment options, was just around the corner.
02/13/06   USA Today - "Maze of Cystic Fibrosis Is Getting a Little Clearer"
When Chip Hawkins was born, the prognosis for patients with cystic fibrosis was bleak.
02/10/06   Parents - "My Son Has Cystic Fibrosis"
I know how sad it is: I diagnosed Nicolas with cystic fibrosis (CF) when he was a week old.
12/06/04   The New Yorker - "The Bell Curve"
Every illness is a story, and Annie Page’s began with the kinds of small, unexceptional details that mean nothing until seen in hindsight.
04/02/01   Forbes - "Drug Money"
Robert Beall called half a dozen biotech companies two years ago, inquiring about automated technology to screen for cystic fibrosis drugs.

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