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On May 28, 2006, Mark Strathern and his father Kirk will began walking 3,500km from Adelaide, South Australia to Perth, Western Australia (via Esperance, Albany and the Bibbulmun Trail) to raise funds and awareness for CF. The walk will take over two months to complete and will finish with an attempt to break the current record for completing the entire length of the Bibbulmun trail. The money that is raised from this walk will help to fund new groundbreaking research into a cure for CF. Funds will help Cystic Fibrosis WA and SA as well as Princess Margaret Hospital for Children continue to provide vital care and support to children with CF and their families.
More information: http://www.theinspiretour.com
Artist for a Cure: One Step Closer is new a compilation of songs by independent and international musicians, featuring freshly emotional melodies and lyrics. This touching collection of contemporary music, released by Song House Publishing, will donate all of the proceeds from its sales to the Cystic Fibrosis Foundation. The title single, by Josh Davis and Eddie Stroop, was the CFF anthem for the “Great Strides” campaign nationwide. Other songs on the album, too, are moving and powerful, ranging from Power of Ten’s “The Things You Do” to “Unbreakable” by Sarah Woodhouse. The two-year project strove to compile seventeen of today’s poignant tracks to aid in the heartfelt search for a cure. One Step Closer is available for purchase from CD Baby, iTunes, Tower Records, and most Internet music stores.
More information: http://www.cdbaby.com/cd/afac
The Cochrane CF & Genetic Disorders Group is part of the Cochrane Collaboration, an international network of healthcare professionals, researchers and consumers who prepare, maintain, and disseminate systematic reviews of randomized control trials. Through production of the Cochrane Systematic Reviews, their aim is to help people make well-informed decisions about healthcare. There will be an excellent opportunity to learn more about this organization at their XIV Cochrane Colloquium in Dublin, Ireland. This exciting program takes place October 23-26, 2006. Please visit
http://www.colloquium.info/ for more information.
CALIFORNIA, USA—Scientists at Stanford University have determined that the buildup of sticky mucus found in CF is caused by a loss in the epithelial cell's ability to secrete fluid.
Currently, there are two essentially opposite explanations for the inability of the body to clear mucus from the airways in CF. The first is that the defective CFTR is unable to aid in fluid secretion in CF airway glands. The second explanation is that the glands still secrete fluid via non-CFTR pathways, but the fluid is reabsorbed by other channels. In fact, it has been proposed that one of CFTR's functions is to inhibit the activity of a channel called the epithelial Na+ channel (ENaC).
Nam Soo Joo and colleagues at Stanford University attempted to determine which hypothesis was correct by measuring the secretion from glands from patients with CF and from normal pigs. They added ENaC inhibitors to the glands to determine if the channel plays a role in mucus clearance. The researchers found no evidence that the inhibitors altered secretion rates in either normal or CF glands. This suggested that loss of CFTR-mediated fluid secretion is the culprit in CF.
Source: “Scientists Discover Basic Defect In CF Airway Glands.” American Society for Biochemistry and Molecular Biology. March 17, 2006.
This handbook and cookbook is designed to help explain how CF affects the human body, and how diet is important in managing the disease. The first section describes the challenge of eating enough of the right types of food to support growth and fight infections. Guidelines follow for creating a healthy diet that meets the needs of the individual. The end of the book contains over 130 recipes provided by individuals with CF, their families and by the University of Wisconsin Hospital and Clinics Clinical Nutrition Department. These easy-to-prepare dishes can help add necessary nutrients and good taste to diets for individuals with CF.
To order a copy, please enclose a check for $10 USD per copy (or $15 for 2nd and 3rd Editions together) made payable to: UW Hospital and Clinics, and send it to UWHC-Clinical Nutrition Services, Room F4/120 CSC, 600 Highland Ave, Madison WI 53792-1510. Include your name, address and phone number. Please enclose an additional $10 per copy for international orders.
LONDON - A saltwater spray almost twice as salty as the Atlantic Ocean has been found to be a cheap and effective treatment for CF. In healthy people, the water layer lining the airways helps to clear away excess amounts of mucus but this water layer is missing in people with CF. Scientists from the University of North Carolina in the US and the University of Sydney in Australia decided to see if salt water might replace that missing lubrication.
The American team treated a small group of CF patients and found the spray to significantly improve mucus clearance, lung function and breathing symptoms. Doctors found that 41% avoided serious complications such as weight loss, coughing up blood or a dangerous infection. The treatment is now used routinely for adults treated for CF at the University of Carolina.
The Australian team then applied the treatment to another 164 patients over the course of a year. They found patients needed far fewer antibiotics for lung infections and had fewer troubling symptoms and improved breathing.
Source: “Salt water spray that can treat CF,” Sarah Sims, Daily Mail (London) March 7, 2006.
More information: American Journal of Respiratory and Critical Care Medicine, Vol 173. pp. 593-598, 2006.
