Latest Cystic Fibrosis Trust Stories

BETHESDA, Md., July 9 /PRNewswire-USNewswire/ -- The Cystic Fibrosis Foundation commends the nomination by President Obama of Francis Collins, M.D., Ph.D., as the new director of the National Institutes of Health (NIH). "The CF Foundation is pleased that Dr. Collins, who was pivotal in the discovery of the gene responsible for cystic fibrosis, may lead the NIH during a time when the expanding role of science is being highlighted by President Obama," said Robert J. Beall, Ph.D., president...

Bill would remove financial penalties for participating in research studies BETHESDA, Md., June 15 /PRNewswire-USNewswire/ -- New legislation introduced today would allow patients with rare diseases to participate in clinical drug studies without losing their eligibility for government healthcare coverage. The "Improve Access to Clinical Trials Act" is co-sponsored by Representatives Edward J. Markey (D-MA) and Cliff Stearns (R-FL) and 30 members of the House of Representatives. Current...

BETHESDA, Md., May 13 /PRNewswire-USNewswire/ -- In recognition of National Cystic Fibrosis Awareness Month, the Cystic Fibrosis Foundation has been invited to ring the closing bell of the New York Stock Exchange today. The Cystic Fibrosis Foundation is the leading organization in the United States devoted to curing and controlling cystic fibrosis, a fatal genetic disease. C. Richard Mattingly, executive vice president and chief operating officer of the Cystic Fibrosis Foundation, will...

Tens of Thousands of Volunteers Seek to Raise $40 Million for Life-threatening Disease BETHESDA, Md., May 7 /PRNewswire-USNewswire/ -- The Cystic Fibrosis Foundation announced today the launch of GREAT STRIDES, a national walk that generates critical funds for life-saving cystic fibrosis (CF) research. The 2009 goal of GREAT STRIDES, the largest CF fundraiser, is to raise $40 million. Tens of thousands of walkers are expected to turn out at 600 sites nationwide from now until June. The...

Foundation Honored by NCQA for Leadership in Improving Care BETHESDA, Md., March 18 /PRNewswire-USNewswire/ -- The Cystic Fibrosis Foundation will be honored today in Washington, D.C., for remarkable leadership in improving the quality of care for people living with cystic fibrosis, by the National Committee for Quality Assurance (NCQA). The outlook for people with CF continues to improve steadily each year because of programs fueled by the Foundation. In the 1950s, few children with...

U.S. medical scientists involved in an international study say they've identified a gene that modifies lung disease severity in people with cystic fibrosis. Wake Forest University Baptist Medical Center researchers said the research is the first published study to search the entire genome looking for genes that modify the severity of cystic fibrosis lung disease. Carl Langefeld, a study co-author and Wake Forest University School of Medicine researcher, said the findings might help in the...

U.S. scientists have turned a relatively benign virus into an infectious form that, in its first gene therapy test, cured cystic fibrosis tissue in culture. Researchers from the University of California-Berkeley and the University of Iowa said their achievement with the benign adeno-associated virus overcomes a major problem of earlier virus-based gene therapy for cystic fibrosis, setting the stage for tests in advanced animal models of the disease. I think it is worthwhile thinking about...

Organization Has Filled More Than 1 Million Prescriptions BETHESDA, Md., Dec. 17 /PRNewswire-USNewswire/ -- Cystic Fibrosis Services, Inc., a wholly owned subsidiary of the Cystic Fibrosis Foundation, today announced its 20th anniversary of providing quality pharmacy services to the cystic fibrosis (CF) community nationwide. The organization was founded in 1988 with one patient, one prescription and a mission to improve access to specialty medications for people with CF. It met an...

Scientists hope that a new development, which allows them to create pigs that develop cystic fibrosis in the same way the people do, will give them new insight into fighting the disease. Scientists at the University of Iowa and the University of Missouri have created genetically engineered piglets with the same mutation that causes cystic fibrosis in humans, they report in the journal Science. Up to this point, scientists have been unable to find any hints that may lead to a possible cure,...

It's not every day you get a visit from the Lord Mayor of Plymouth - but that's what happened to Harvey Skinner, aged four, during a stay at Derriford Hospital. Harvey, who lives in Stoke and has cystic fibrosis, was in Woodcock Ward when Lord Mayor Brian Vincent and Lady Mayoress Pauline Murphy came to call. The Cystic Fibrosis Trust is the Lord Mayor's chosen charity for his year in office, and he was presented with a cheque for pounds250 by Emma Millar, another patient who also has the...