SunSations

The Alpha-1 Foundation

Written by South Beach Annie

When John Kushner, commercial realtor, walked in to the Commander’s Palace in New Orleans and befriended head chef Emeril Lagasse he probably never dreamt that this new friendship would ultimately lead not only to the pain of loss but to the hope for tomorrow. The Alpha-1 disease that claimed John’s life in 2005 would suddenly become the driving force behind the efforts of Emeril to raise funds for research to eradicate the Alpha-1Antitrypsin Deficiency. Founded in 1995 by John Walsh, Susan Stanley, and Sandy Lindsey, all diagnosed with “Genetic COPD”, the Alpha 1 Foundation (www.alphaone.org) is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and, with great perseverance and dedication, a cure. The Foundation has realized continuous growth since its inception and has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institute of Health (NIH), the Food and Drug Administration (FDA), individuals affected by the disease, and the pharmaceutical industry to try to expedite the development of improved therapies, including aerosol delivery for augmentation therapy. The Alpha-1 Foundation participates in industry and government liaison groups and participates in strategic alliances with government, industry, and the other national and international health and research organizations. Though there are an estimated 100,000 people with Alpha-1 in the United States, fewer than 10 percent have been properly diagnosed. John Kushner was one of the few, though he had symptoms for years and was critically ill with both lung and liver disease, both related to Alpha-1, before his correct diagnosis. Otherwise healthy, John began developing symptoms such as shortness of breath, wheezing, and constant coughing. The condition can show up in liver disease in childhood and lung or liver disease at any age. More than twelve million Americans have been diagnosed with the lung disease COPD (Chronic Obstructive Pulmonary Disease), with three percent possible carriers of Alpha-1. “Alphas” are people with two defective Alpha-1 genes characterized by very low amounts of Alpha-1 protein in their blood. Protein tends to pile up in the liver or isn’t made in the liver at all. This lack of Alpha-1 protein in the blood can lead to COPD. About twenty million “carriers” in the U.S. have one defective Alpha-1 gene and can pass the gene on to their children. John moved from his spot at the chef’s table at Commander’s Palace to the chef’s table in Emeril’s own restaurant in New Orleans and then on to the current restaurant location that John helped Emeril locate in Miami Beach. The JK (John Kushner) soufflé is a living legacy to this loyal friendship that may one day prove to be the perfect ingredient for the recipe for a cure for Alpha-1Antitrypsin Deficiency.-DUO

 Advertisement