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Build your own Sundae and learn more about a “rarely diagnosed disease” that can cause life threatening lung and liver deterioration.
Get the Scoop on Alpha-1 – Ice Cream Social for a cure
Des Moines, IA – June 3, 2009 – Please join us July 19, 2009 from 1pm to 5pm in the Johnston Barn for ice cream and live music featuring the Waukee Big Band and vocalist Lisa Cole.
Alpha-1 antitrypsin deficiency, also known as genetic emphysema, is one of the most common serious hereditary disorders. More than 100,000 people in the US are estimated to have AAT deficiency, yet only 1 in 10 have been diagnosed. People who realize they have the genes can receive treatment to slow or even prevent onset of the fatal disease.
“My mother died of Alpha-1 and I, unfortunately also suffer from the disease,” says Iowa Alpha-1 Support Group Leader, Peg Iverson, “We hope to raise awareness and funds for research into a cure for this very serious and relatively unknown life threatening disorder.”
“My Dad has an incurable disease called Alpha-1 Antitrypsin Deficiency and he will eventually need a double lung transplant,” says Liz Corron.
Alpha-1 Antitrypsin Deficiency (AAT Deficiency or Alpha-1) is a disease caused by the lack of a protein that protects lung tissue from irritants, eventually causing them to no longer be able to exchange oxygen and carbon dioxide with the bloodstream. Breathing becomes more and more difficult as the lungs deteriorate.
The most devastating part about this is that the longer it goes undetected, the more damage the disease causes to the lungs. Many people are misdiagnosed due to lack of awareness. There is no cure and anyone diagnosed with the disease can only take steps to ensure that the damage doesn’t get worse.
“In my dad's case,” says Liz Corron, “he noticed difficulty breathing after physical activity. He went to the doctor frequently determined to find out what was wrong. The disease wasn’t helping him breathe any better. Finally in 2005, after seeing many different doctors, he was diagnosed after several other medical conditions were ruled out. By the time of his diagnosis, his lung capacity was dramatically reduced and the doctors described his lungs as severely damaged. Now, four years later, he is at only a 35% lung function and will eventually need a double lung transplant in order to survive.”
There are approximately 10,000 Alpha-1 sufferers throughout the United States and many more throughout the world that are asking for help to find a cure. It’s estimated that there are an estimated 20,000,000 carriers of Alpha-1 Deficiency in the United States alone.
Please donate to the Alpha-1 Foundation and help find a cure.
For more information about alpha-1 antitrypsin deficiency or if you are interested in volunteering or donating in the quest for a cure, please contact Tom Corron at (515) 745-2043 or tcorron@mchsi.com.
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