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Cystic Fibrosis

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NEWS
June 28, 1990 | By Pauline Pinard Bogaert, Special to The Inquirer
They ran, jumped, shot, pulled, hit, yelled, pained and strained on Saturday at Villanova's football stadium. It wasn't for the Olympic gold but for cystic fibrosis, and their efforts netted $45,000 for the organization. "The real winner today is cystic fibrosis," said Harold "Spike" Yoh of Bryn Mawr, chief executive officer of Day & Zimmerman Inc., sponsor of the second Day & Zimmerman Sports Challenge. A total of 36 corporations from around the Philadelphia area sponsored teams of 10 men and women to compete in six events: tug of war, obstacle course, basketball shoot, softball throw, relay race and standing long jump.
NEWS
February 9, 1988 | By Rebecca Barnard, Special to The Inquirer
Anne Rachael McFarland, 19, 1972 poster child for the Delaware Valley Cystic Fibrosis Foundation, died yesterday at St. Christopher's Hospital for Children in Philadelphia. Miss McFarland, of Willingboro, received John F. Kennedy High School's Distinguished Achievement Award upon her graduation in 1987. "She was a real plugger, despite the breathing handicap," her father, Harry W. McFarland, said last night of his daughter, who was a member of the high school varsity tennis team.
NEWS
February 28, 2014 | By Kathy Boccella, Inquirer Staff Writer
Emily Kramer-Golinkoff, a 29-year-old with big eyes and long straight hair, is like a lot of other single young women living in Center City: She tracks her exercise with a Fitbit, meets friends for dinner, and works as a new-media researcher. But unlike other twentysomethings, she devotes much of her day to an all-consuming mission: Extending her life. Kramer-Golinkoff's outward vitality masks the rapidly advancing state of a deadly disease, cystic fibrosis. With her lungs operating at 37 percent capacity, she undergoes an arduous three- to four-hour routine of breathing rituals and medications simply to face every day. With life expectancy for her illness in the 30s, Kramer-Golinkoff is throwing much of her waning energy into a philanthropy, Emily's Entourage, with a single mission - to find a cure that will save her life, as well as those of others with her rare form of the disease.
ENTERTAINMENT
January 15, 2013 | By Art Carey, Inquirer Columnist
Jim Wilson describes himself as "an adrenaline junkie. " It began with motocross racing when he was a teenager. Later in life, he became a mountain and ice climber, scaling peaks all over the world. "I really liked ice climbing," Wilson says. "It's like doing a dance with ice. The ice is always changing and different. " In 2009, realizing that he was courting more fatal risks, Wilson quit climbing and turned to mountain biking, which he had taken up in the mid-1990s to reform his body.
NEWS
March 3, 2015 | By Suzette Parmley, Inquirer Staff Writer
When she was 6, Julia Rae Schlucter was assigned a child-life specialist at Children's Hospital of Philadelphia, where she was being treated for a lung condition. Schlucter, 22, of Wayne, the newly crowned Miss Philadelphia, was diagnosed before birth with cystic fibrosis, a genetic lung disease that can be fatal. The specialist, Christina Brown, made sure Schlucter's needs as a child, and not just as a patient, were met, including having sufficient play and creative time. On Saturday, Brown, 59, was in the audience at the Kurtz Center for Performing Arts as Schlucter won the title.
NEWS
July 19, 2008 | By Mari A. Schaefer INQUIRER STAFF WRITER
The comedian Kenneth Keith Kallenbach died of complications from cystic fibrosis, according to an autopsy report released yesterday by the Delaware County medical examiner. Kallenbach, 39, was best known as a member of the "Wack Pack" on Howard Stern's radio show. He suffered from the inherited disease and died April 24 at Riddle Memorial Hospital after being transferred from the George W. Hill Correctional Facility in Thornbury, where he had been held since mid-March. After an autopsy in April, the medical examiner said further investigation was needed to determine the cause of death.
NEWS
September 2, 1989 | By TERESA MULLIN
A little more than two years ago, I stood at my friend's bedside and urged her to hang on. Medical researchers were about to find the gene causing cystic fibrosis, I told her - maybe in just a couple of years. After all, they had isolated the chromosome. But Nellie shook her head. She knew she wouldn't make it - and she didn't. Now she's missing the fanfare, as are countless others. I didn't realize when I first was diagnosed that cystic fibrosis killed people. I was only 4 years old. Last week, I read a report that the gene had been isolated.
SPORTS
May 22, 2000 | By Ira Josephs, INQUIRER SUBURBAN STAFF
Ilene Hollin likes to zap her teammates and coaches with one-liners and jokes. Then, when the laughter dies down, she awes them with spellbinding desire and determination. Hollin, a Plymouth-Whitemarsh junior, is not the fastest player on the Colonials' lacrosse and field hockey teams. She is not the strongest or most talented. She may be the most inspiring, though. Hollin has cystic fibrosis, a disorder of the lungs and digestive system, but her teammates and coaches say they can't tell by the way she plays and practices.
NEWS
March 19, 1992 | By Susan FitzGerald, INQUIRER STAFF WRITER
A new genetically engineered drug is able to chop up the thick mucus that clogs the lungs of cystic fibrosis patients, making it easier for them to breathe. Researchers, in today's New England Journal of Medicine, say the experimental drug might help extend the life of cystic fibrosis patients, who usually die of respiratory complications by their late 20s. The drug is one of several new treatments being tested for cystic fibrosis - the most common fatal inherited disease in the country, affecting about 30,000 people.
NEWS
January 5, 1993 | By Jim Detjen and Susan FitzGerald, INQUIRER STAFF WRITERS
Sometime this spring, scientists at the University of Pennsylvania plan to squirt a liquid containing a common cold virus into the lungs of cystic fibrosis patients. This might seem foolhardy, considering how dangerous colds can be for someone with this deadly lung disease. In this case, though, the scientists will have tinkered with the virus so it won't really cause colds. Instead, it will be used to carry healthy copies of the cystic fibrosis gene into the patients' lungs.
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ARTICLES BY DATE
NEWS
May 7, 2016
By Michael O. Leavitt The late Neil Armstrong once said, "Research is creating new knowledge. " In recent years, the world has witnessed unprecedented medical advances that have forever changed how we research and treat debilitating diseases. For example, new discoveries in the field of immunotherapy are helping scientists rethink their approach to cancer. Hepatitis C, which had a cure rate of 40 to 50 percent just five years ago, is curable in nine out of 10 patients today. Even diseases like cystic fibrosis, which deprive most patients of living past their late 20s, are seeing new treatments after decades of having none.
NEWS
May 23, 2015 | By Phil Anastasia, Inquirer Staff Writer
Haddonfield baseball star Charlie Clarke did something special at the ballpark. His coach was amazed. But Clarke didn't make a diving catch in center field, steal a base or rope a game-winning hit to the gap. The senior stood up in front of a room filled with more than 200 people and spoke from the heart about his appreciation for their contributions to his special cause. "I couldn't believe it," Haddonfield coach Bob Bickel said. "Here was this young guy and he handled himself so well in front of so many people.
NEWS
April 17, 2015 | By Walter F. Naedele, Inquirer Staff Writer
Even in kindergarten, Lisa Marino knew how to deal with her cystic fibrosis, said Danielle Westfall, her friend for 35 years. "From the time she was 5, 6 years old, she knew when to take her medicine," Westfall said, and together in school, "we would walk down to the nurse. " Walking down the corridor, she seemed like anyone else. But through the years, Westfall said, "she knew when she was getting rundown. She would say, 'It's time for me to go see my doctors.' " The condition, Westfall said, "never defined her. It was something she dealt with every day, like brushing her teeth.
NEWS
March 3, 2015 | By Suzette Parmley, Inquirer Staff Writer
When she was 6, Julia Rae Schlucter was assigned a child-life specialist at Children's Hospital of Philadelphia, where she was being treated for a lung condition. Schlucter, 22, of Wayne, the newly crowned Miss Philadelphia, was diagnosed before birth with cystic fibrosis, a genetic lung disease that can be fatal. The specialist, Christina Brown, made sure Schlucter's needs as a child, and not just as a patient, were met, including having sufficient play and creative time. On Saturday, Brown, 59, was in the audience at the Kurtz Center for Performing Arts as Schlucter won the title.
NEWS
December 28, 2014 | By Dr. Daniel Taylor, For The Inquirer
Recently, a 1-year-old boy was brought to our practice for a routine checkup. He was a very healthy toddler and had been reaching all his milestones in both growth and development with absolute perfection. He had a flawless neonatal course, and all his lab work to date - including his newborn screen, complete blood count and lead test - were all within normal limits. His physical exam was completely normal until I found something ominous on his skin that would alter his life.
SPORTS
August 19, 2014 | BY MARK PERNER, Daily News Staff Writer pernerm@phillynews.com
FOR THE Montelone family, "Surf's up" has become a rallying cry, as three of the family's five children are affected by cystic fibrosis. They are also part of a growing trend of families taking advantage of the health benefits that come with surfing. Hard to believe, but researchers have discovered that the saltwater in the ocean helps clear out the thick mucus that builds up in patients' lungs. "We have found the silver lining to it all and that has been through surfing," Paulette Montelone told the Associated Press while her five children were out in the water at San Onofre State Beach in California.
NEWS
July 12, 2014 | By Kristin E. Holmes, Inquirer Staff Writer
Marriage was always an unsettling next step for Missi Wright and Bill Carroll II. The Morton, Delaware County, couple, together for 11 years, often talked about it but were afraid of the consequences. A wedding meant that Wright's health insurance could be in jeopardy. Carroll didn't always have the kind of job and coverage that a wife like Wright would need. Cystic fibrosis had sapped Wright's ability to work regularly. Breathing was sometimes a struggle. Hospitalization, a regularity.
NEWS
February 28, 2014 | By Kathy Boccella, Inquirer Staff Writer
Emily Kramer-Golinkoff, a 29-year-old with big eyes and long straight hair, is like a lot of other single young women living in Center City: She tracks her exercise with a Fitbit, meets friends for dinner, and works as a new-media researcher. But unlike other twentysomethings, she devotes much of her day to an all-consuming mission: Extending her life. Kramer-Golinkoff's outward vitality masks the rapidly advancing state of a deadly disease, cystic fibrosis. With her lungs operating at 37 percent capacity, she undergoes an arduous three- to four-hour routine of breathing rituals and medications simply to face every day. With life expectancy for her illness in the 30s, Kramer-Golinkoff is throwing much of her waning energy into a philanthropy, Emily's Entourage, with a single mission - to find a cure that will save her life, as well as those of others with her rare form of the disease.
NEWS
August 29, 2013 | By Marie McCullough, Inquirer Staff Writer
It has become a cliché to call critically ill children "fighters. " But there is no better word to describe Sarah Murnaghan, the girl who, with her equally indomitable parents, has battled cystic fibrosis, national lung allocation rules, and the rigors of double lung transplant surgery - twice. Early Tuesday morning, the 11-year-old left Children's Hospital of Philadelphia after more than six months, and arrived home in Newtown Square about 9:30 a.m., to the glee of her three younger siblings.
NEWS
May 26, 2013 | By Marie McCullough, Inquirer Staff Writer
For the parents of Sarah Murnaghan, 10, who is dying of cystic fibrosis at Children's Hospital of Philadelphia, the bottom line seems heartbreakingly simple: She should be offered the first suitable lungs that become available, whether the donor is a child or adult. Instead, the Newtown Square couple say, organ-donation rules require adult lungs to be offered first to adults who are in less dire need than Sarah. There is nothing simple about this case or the rules governing transplants.
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