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Alpha friend and leader Jim Quill passes away

Alpha friend and leader Jim Quill passes away
Monday, January 14, 2019
It is with a heavy heart that the Alpha-1 Foundation shares the passing of a dear friend and leader, James Quill on Sunday, January 13th, 2019 in Bluffton, South Carolina. He was 67. Jim was on the Alpha-1 Foundation Board of Directors since 2012 and recently served as the Vice Chair and Treasurer. He was a dedicated AlphaNet Coordinator for 10 years and retired as the General Manager for...
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Celebrating women: Caregiver Donna Thornton

Friday, March 9, 2018
During Women’s History Month, we are featuring the stories of women who help make the Alpha–1 community great. Donna and Kreg Thornton could not convince their primary care physician that Kreg’s breathing issues were not...
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Mapping a genetic risk

Friday, March 9, 2018
Clinicians and health researchers often look at gene mutation to predict whether a fetus is at risk for a birth defect, or a person is at risk of developing a disease, but these predictions are not always accurate. The more information you have,...
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Alpha-1 liver disease differs in kids and adults

Wednesday, March 7, 2018
A systematic literature review determined that clinical factors associated with the development of liver disease in patients with Alpha-1 Antitrypsin Deficiency (Alpha-1) differed among children and adults. For instance, in 12 studies of...
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Lung transplant policy under public review

Tuesday, March 6, 2018
Current guidelines of the Organ Procurement and Transplantation Network (OPTN), a division of the Health Resources and Services Administration (HRSA), with the U.S. Department of Health & Human Services (HHS), state that many factors used to...
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Remembering Kay Swift

Monday, March 5, 2018
AlphaNet Coordinator for Disease Management and Alpha Kathryn (Kay) Ruth Swift of Rolla, Missouri, passed away on February 22, 2018, at Barnes Jewish Hospital in St. Louis, Missouri. Kay was highly appreciated in the Alpha-1 community and will be...
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Celebrating Women: Alpha-1 Mom shares son's transplant journey

Friday, March 2, 2018
During Women's History Month, we are featuring the stories of women who help make the Alpha-1 community great. Jude’s journey began at 4 weeks of age when, following seizures and emergency brain surgery, he was diagnosed with a...
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Global Commission to accelerate time to diagnosis for children with rare diseases created

Thursday, March 1, 2018
In order to address the diagnostic challenge for patients living with a rare disease, a strategic alliance was created by Shire, Microsoft and EURORDIS-Rare Diseases Europe. The long road to diagnosis is one of the most important issues affecting...
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Grifols launches educational campaign: "Look into Genetic COPD"

Wednesday, February 28, 2018
Grifols, Barcelona, a leader in the production of plasma-derived medicines and in diagnostic and hospital solutions to improve people's health, is drawing attention to Alpha-1 Antitrypsin Deficiency (Alpha-1), also known as genetic chronic...
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“The job is not done,” says legislative advocate Ken Richmond

Wednesday, February 28, 2018
Advocacy plays an important role in our community, more so when it comes to fighting for what is right for those that are most affected by Alpha-1 Antitrypsin Deficiency (Alpha-1): Alphas themselves. Legislative Advocate, Ken Richmond, at the...
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Adverum applauds the Alpha-1 community, recruitment continues

Monday, February 26, 2018
The Alpha-1 Foundation (A1F) is proud of having been instrumental when Adverum Biotechnologies recruited patients for a clinical trial for Alpha-1 Antitrypsin (A1AT) Deficiency, designed to evaluate the safety and protein expression following a...
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Clinical trial for liver disease treatment will follow orphan drug designation

Wednesday, February 21, 2018
The US Food and Drug Administration (FDA) granted orphan drug designation to Arrowhead Pharmaceuticals’ ARO-AAT, their second-generation investigational medicine for the treatment of a rare genetic liver disease associated with Alpha-1...
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Alpha-1 researchers use CRISPR technology to create the first mouse model of genetic emphysema

Friday, February 16, 2018
Humans have only one gene that codes for the Alpha-1 protein, but mice have up to six, which made it impossible for decades to create a mouse model of the disease. Now a group of scientists, headed by Dr. Christian Mueller, of the Horae Gene...
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