Media Contact
Phone -- 314.286.0375
Live Web Cast Set for June 25
St. Louis (June 16, 2004) — St. Louis Children’s Hospital, Barnes-Jewish Hospital, and Washington University in conjunction with the Cystic Fibrosis Foundation, will host its first live Virtual Patient Education Day for people with cystic fibrosis (CF). “CF Nutrition: News You Can Use” will focus on how a strong nutrition regimen can make a difference in the lives of people with CF. Fundamentals, practical tips and research on nutrition and CF will be presented. People with CF, their parents, family members and caregivers are encouraged to join and to ask questions of the expert panel via e-mail. The live Web cast will take place on June 25 at8 p.m. CDT (9:00 p.m. EDT, 7:00 p.m. MDT and 6:00 p.m. PDT).
“We believe nutrition is the ‘secret weapon’ in the fight against CF,” says Thomas Ferkol, M.D., director, CF Care Center at St. Louis Children’s Hospital and associate professor of pediatrics at Washington University School of Medicine. “When children are first diagnosed, some parents don’t understand the importance of good nutrition in improving overall lung function, productivity, and survival. We are excited to participate in this unique live Web cast to spread that message nationwide and to address the questions that many people have about what’s best for their child or themselves.”
CF is a life-threatening, genetic disease that causes the build-up of thick, sticky mucus in the lungs and pancreas leading to chronic lung infections and difficulty digesting food and absorbing nutrients. Recent research has shown that not only does good nutrition impact growth and weight in people with CF, it also impacts their respiratory and overall health.
The CF Foundation advises against close contact among people with CF due to the potential spread of infection-causing bacteria that can very harmful to their lungs. The Internet affords people with CF a safe, alternative way of learning and interacting with one another while receiving information from qualified health care professionals. This Web cast is the third in the CF Foundation’s series of Virtual Patient Education Days designed to disseminate timely information to patients and their families. The first two Web casts, “The Patient As a Partner In Research” and “How to Avoid Germs in CF” are archived on the CF Foundation’s Web site at www.cff.org and can be accessed in the Living with CF section of the Web site.
“These Web casts create the sense of community that patients and their families often need and cannot have in person,” says Preston W. Campbell III, M.D., executive vice president for medical affairs of the CF Foundation. “We selected St. Louis Children’s Hospital to host our third Web cast because of the knowledge and expertise they have displayed in the area of nutrition in CF and because it is part of our Therapeutics Development Network, a group of specialized CF care centers that conduct clinical trials. We are confident that people with CF will benefit from the knowledge and expertise this panel represents and that they will leave the Web cast with a greater understanding of the importance of good nutrition and how they can enhance their own dietary regimens.”
Interested participants may pre-register and enter questions now on the CF Foundation’s Web site at www.cff.org by clicking on the “Virtual Patient Education Day” icon and entering code #PT625. Those unable to participate, or access the live Web cast, will be able to view an archive of the event via the CF Foundation’s Web site in July. Questions may still be submitted after the live event and will be answered in written form on the www.cff.org site. The Virtual Patient Education Day Web cast is made possible through an unrestricted educational grant from Genentech, Inc.
About CF and the CF Foundation
CF is a genetic disease affecting approximately 30,000 people in the United States . A defective gene causes the body to produce abnormally thick, sticky mucus that leads to chronic and life-threatening lung infections and impairs digestion. When the CF Foundation was created in 1955, few children lived to attend elementary school. Today, because of research and care supported by the CF Foundation with money raised through donations from individuals, corporations and foundations, the median age of survival for people with CF is in the early 30s.
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. For more information on CF, call (800) FIGHT CF or visit www.cff.org.
St. Louis Children's Hospital has provided specialized care for children for more than 125 years. Children's Hospital is affiliated with Washington University School of Medicine, ranked the second best medical school in the country by U.S. News & World Report. In 2003, Child magazine ranked St. Louis Children's Hospital sixth on its list of the 10 Best children's hospitals in the country, and fourth in neonatology/neonatal intensive care unit (NICU). St. Louis Children's Hospital also is a member of BJC HealthCare.