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DNA data shared in ways patients may find surprising

DNA data shared in ways patients may find surprising
Tuesday, August 13, 2019
Deals between drugmakers and hospital systems to mine the genetic profiles of hospital patients are triggering concerns over the control of valuable genetic data. Drugmakers have been spending hundreds of millions of dollars for access to patient information because of the data’s potential to help unlock disease insights and discover new drugs. They are striking deals to sequence...
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The Family that Tests Together

Friday, March 16, 2012
How much do you know? How much do you want to know? Once you know more, what will you do? When a family member is diagnosed with a genetic condition like Alpha-1, these are some of the questions that arise about family testing. For Scott...
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The Human Touch

Friday, March 16, 2012
Whenever Cathey Horsak feels down and discouraged, she rereads some words that she clipped from a magazine long ago. When she finds Alphas or their family members who feel the same way, she shares the clipping with them. The words come from the...
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Alpha learns his lesson — and now teaches it to others

Friday, March 16, 2012
Dan Martini learned a lot from pulmonary rehab classes—so that helped him decide to become a Respiratory Therapist Dan Martini thought he knew exactly why he was short of breath: “I was overweight, lazy and smoked two packs of...
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Lost and Found

Friday, March 16, 2012
In 1994, Dennis Pollock was not looking forward to attending his first Alpha-1 support group meeting – he was 34 years old, and it had been less than a year since he had been diagnosed with Alpha-1. His pulmonologist had told him that...
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Metamorphosis of an Alpha-1 Patient

Friday, March 16, 2012
Reflecting on my confirmed diagnosis of having inherited Alpha-1 Antitrypsin Deficiency ZZ and thinking about where I am today closely parallel the metamorphosis of a butterfly. Encouraged by my younger brother and his wife, a nurse I...
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Walking sticks are “functional art” — and a contribution to research

Friday, March 16, 2012
Marvin Sineath and Dick Chappell have never met, or even spoken on the phone, but they’re teaming up to raise money for Alpha-1 research, and they’re doing it from two different states. Chappell started making walking sticks for...
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One Transplant, Two Cures

Friday, March 16, 2012
Michael Locke could easily run up the steps of his summer cottage in the popular Canadian vacation area of Muskoka, Ontario. Why not? He was a lean, healthy man in his 50s, never smoked, and he’d run up those steps for years without a...
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The Fire Inside

Friday, March 16, 2012
When Alpha and former firefighter Ed Brailey calls himself a “steak-and-eggs guy,” he’s not just talking about breakfast. He means that he still likes hanging out at the firehouse every now and then, sharing some eats, and...
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A Family Affair

Friday, March 16, 2012
The Eymer family boys formed a bicycle motocross (BMX) racing team a few years ago in Wadsworth, Ill – now, to spread the word about Alpha-1, they’re letting their wheels do the talking. Jayson Eymer is a teenager in love. Although...
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Gary and his EFFORTS

Friday, March 16, 2012
When Gary Bain was first diagnosed with emphysema in 1986, his doctor told him he had about six years to live. Bain couldn’t believe his ears. “Why does a doctor first tell you how long you have to live? I didn’t like that...
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In memory of Gavin

Friday, March 16, 2012
Alpha-1 liver disease cost Gavin his life, and now, his mother is doing whatever it takes to raise awareness so that she may one day save another child's life. In just 11 months of life, Gavin was hospitalized seven times. He went through three...
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A Golf Ball in the Woods

Friday, March 16, 2012
Gordon Cadwgan as diagnosed in 1992, when the first national meeting of the new Alpha-1 Association took place - he and his wife, Ruth, traveled from their home in Wilmington, Delaware, to the conference in Minnesota. Gordon had been running...
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