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Alpha-1 Antitrypsin Deficiency Topic of NBC’s ER Episode
MIAMI, FL
December 2, 2002
In a recent episode of NBC’s ER, a 26 year-old patient with advanced emphysema and cirrhosis of the liver painfully manages to explain to the doctors on the show she suffers from Alpha-1 Antitrypsin Deficiency or Alpha-1.
Alpha-1 is one of the most common serious hereditary disorders in the world and can result in life-threatening liver or lung disease in children and adults. While Alpha-1 is more common than Cystic Fibrosis it is under diagnosed and often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). An estimated 100,000 Americans and a similar number in Europe have the deficiency. An estimated 21 million people in the U.S. are undetected carriers of an abnormal gene that causes Alpha-1 and may pass the gene on to their children.
Great strides are being made every day in research of Alpha-1. This stance is echoed by one of the doctors on the show who says, “Anything could happen, a cure could happen. Stem cell research is a reality, it’s coming whether it’s approved by the government or not.” New developments in gene therapy are underway, clinical trials for new therapies are being developed by a number of pharmaceutical companies.
“When a mainstream venue as big as NBC’s ER takes notice, the point comes across, the need and urgency for increased research and increased dollars is heard loud. National focus and attention such as this gives a clear indication of the speed at which progress continues to develop,” says John W. Walsh, President & CEO Alpha-1 Foundation. “The Foundation is grateful to Karen and Ron Fraser for their tireless efforts and determination to help raise awareness of this genetic disorder.
The Alpha-1 Foundation is committed to supporting the research and information exchange required to find a cure for Alpha-1. The Foundation is the major funding organization within the scientific community studying Alpha-1, and has funded more than $10.4 million in Alpha-1 research and programs including grants and awards at more than 31 institutions in North America and Europe. The Foundation’s support of annual International Scientific Conferences and a series of Critical Issues Workshops, and a growing number of working groups and advisory committees has made possible the exchange of ideas and concepts that have advanced the understanding of a variety of genetic conditions.
The Alpha-1 Foundation is a not-for-profit organization dedicated to providing the leadership and resources that will increase research, improved health, worldwide detection, and a cure for Alpha-1. For more information call toll free, (877) 2-CURE-A1 (228-7321) or visit the Foundation web site, at www.alphaone.org .
Contact: Silvana Rodriguez Alpha-1 Foundation 1-888-825-7421 ext. 230 Email: srodriguez@alphaone.org |