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CFF In the News

CFF In the News

05/27/15   Fortune - Charities are making big money by acting like venture capitalists
When the Cystic Fibrosis Foundation started giving money to a small biotech firm back in 2000, its moonshot of a best-case scenario was that the company would discover a new treatment for the debilitating disease.
05/18/15   Washington Post - ‘Groundbreaking’ cystic fibrosis treatment could improve quality of life for thousands
There’s only one approved drug that targets the underlying cause of the disease but it has only been found useful for a miniscule fraction of patients with a certain genetic mutation. Scientists reported this week that they believe they may have come up with a treatment that will be effective for thousands more.
05/17/15   Seattle Times - ‘Breakthrough’: Drug trials give new hope on cystic fibrosis
No one’s calling it a cure, but results of two large clinical trials co-led by a Seattle researcher find that a new drug may successfully treat the problem protein in nearly half of people with cystic fibrosis — and reduce the leading cause of death from the disease by 40 percent.
05/13/15   Boston Business Journal - Analyst: Patients were key to Vertex panel recommendation
“There were total 17 patient advocates including patients, parents, and researchers who talked about the life-changing benefit of Orkambi, and it was one of the most powerful and convincing testimonies according to some of the panelists,” Liang wrote.
05/12/15   New York Times - Cystic Fibrosis Drug Wins Approval of an F.D.A. Panel
A federal advisory committee on Tuesday recommended approval of a drug from Vertex Pharmaceuticals that might eventually help nearly half of patients with cystic fibrosis.
05/12/15   Associated Press - FDA Panel Backs Vertex Combination Pill for Cystic Fibrosis
Vertex Pharmaceuticals has asked the Food and Drug Administration to approve its twice-a-day drug for patients with the most common form of cystic fibrosis, a deadly inherited disease that causes sticky mucus buildup in the lungs and other organs, leading to infections and early death.
03/25/15   Associated Press - Science, industry economics, patients are boosting research on rare disease drugs and hope
One financial model for rare diseases is the groundbreaking "venture philanthropy" pioneered by the Cystic Fibrosis Foundation, which funded early research on four key medicines for the genetic disease. Those drugs and better care raised average life expectancy from 10 years in the 1960s to 41 today.
03/04/15   Med City News - The secret sauce of venture philanthropy: Passion and forced collaboration #CEDLSC15
A sort of forced collaboration between academia and industry helped the CFF usher in the development of the CF drug Kalydeco – and the concept of venture philanthropy, said Preston W. Campbell, the executive vice president for medical affairs at the CFF.
02/24/15   Cystic Fibrosis News Today - CFF Meeting Outlines Direction and Future of CF Health Care and Research
During the thirty-minute meeting, hosted by key members of the Foundation, two points were reinforced; fundraising efforts across the United States and elsewhere must remain vitalized and the Foundation will not stop their efforts until every person living with the disease has a permanent cure.
02/15/15   The Wall Street Journal - Arkansas Reaches Settlement in Cystic Fibrosis Drug Suit
Arkansas Medicaid officials have reached a legal settlement to resolve claims the state denied patients a cystic fibrosis therapy made by Vertex Pharmaceuticals Inc. due to its cost.
01/20/15   Forbes - Obama's Precision Medicine Initiative: Paying For Precision Drugs Is The Challenge
Let’s take cystic fibrosis, for example. Sitting tonight with the First Lady was Stanford University graduate and Wright State University medical student, Bill Elder. The 27-year-old doctor-to-be was born with a disease we call cystic fibrosis. The disease results when a protein pump controlling chloride in organs like the lungs, pancreas, and intestines, doesn’t perform up to snuff.
01/14/15   Forbes - Did the Cystic Fibrosis Foundation Really Do Anything Wrong? A Times' Op-Ed and the Threat to Philanthropy
The following scenario might not seem, at first, to be cause for criticism in a strongly-worded New York Times op-ed. A breakthrough drug is developed and marketed for a dread, debilitating disease. A substantial portion of the profit from its sale will go to a charitable foundation—which, by law, can only use those profits for charitable purposes.
01/12/15   New York Times - Ways to Fund Research on Rare Diseases [Letter to the Editor]
The Cystic Fibrosis Foundation is working tirelessly for people suffering from this fatal genetic disease. Sixty years ago, when the foundation was established, the average life expectancy of a child with cystic fibrosis was five years.
01/12/15   Boston Globe - In biotech, patient advocates’ voices heard; Foundations help fund drug research
The Cystic Fibrosis Foundation, an early investor in Boston-based Vertex Pharmaceuticals Inc.’s drugs to treat the chronic lung disease, caught the attention of other patient advocates in November, when it disclosed that it had made $3.3 billon by selling its royalty rights.
12/10/14   Reuters - Shire teams up with foundation to tackle cystic fibrosis
Pharmaceutical company Shire said it would work with a specialist cystic fibrosis foundation on developing a technology to improve patients' lung function and reduce infections.
12/10/14   Bloomberg - Shire Sees Experimental Drugs Adding $3 Billion to Sales
Shire also said today it will receive $15 million from the Cystic Fibrosis Foundation’s nonprofit drug development arm to support its efforts to develop a new treatment to target the gene responsible for the lung disease.
12/09/14   Sports Illustrated - York High's Kate Marshall is SI's Dec. High School Athlete of the Month
Of course Kate isn’t like any other athlete out there. She was the first to the huddle at halftime and the only one to trot back to the goal and fist-bump the keeper at the game-ending whistle. She was also the only one out there going all out on 90-percent lung capacity, a result of the genetic disease cystic fibrosis.
11/19/14   The New York Times - Deal by Cystic Fibrosis Group Raises Cash and Some Concern
About 15 years ago, the Cystic Fibrosis Foundation made what was considered a risky foray for a nonprofit organization into the world of business.
11/19/14   The Diane Rehm Show - The Cystic Fibrosis Foundation: New Opportunities, New Questions For Nonprofits
It's a game changer. That's how many people have described the Cystic Fibrosis Foundation's $3.3 billion windfall, thanks to an investment made years ago in a small drug development company.
11/19/14   The Wall Street Journal Online - Cystic Fibrosis Foundation Sells Drug’s Rights for $3.3 Billion; The Biggest Royalty Purchase Ever Reflects Group’s S
The Cystic Fibrosis Foundation said Wednesday that it would receive $3.3 billion for the sale of royalty rights to drugs developed with its financial support.
11/19/14   Bloomberg - Cystic Fibrosis Charity Sells Drug Royalties for $3 Billion
The Cystic Fibrosis Foundation will sell royalties it gets from Vertex Pharmaceuticals Inc. (VRTX) for $3.3 billion to Royalty Pharma, taking a profit from charitable investments made to fight the fatal lung disease.
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 - 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 - Who will own the future of healthcare?
Consumers are not only empowering themselves through information about health but also by becoming participants in health innovation. Patient groups such as the Cystic Fibrosis Foundation and Food Allergy Research & Education directly fund and develop novel therapies that benefit patients in partnership with industry.
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.
11/18/13   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.
05/07/12   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.
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 - "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.

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