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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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FDA acts to address youth e-cigarette use

Friday, September 14, 2018
The U.S. Food and Drug Administration (FDA) announced a series of critical actions related to the sale and marketing of electronic cigarettes (e-cigarettes) and related products to minors. Since March, FDA compliance checks have uncovered more...
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Emergency preparation and lung disease

Wednesday, September 12, 2018
Everyone, especially patients that require the use of oxygen or other special medical equipment, should never wait long before putting an emergency plan into practice, for emergencies, catastrophes or natural or man-made disasters. And putting...
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Augmentation therapy patient-pioneer, Gerry Treichel, passes away

Wednesday, September 12, 2018
It is with a heavy heart that the Alpha-1 Foundation announces the passing of Gerald (Gerry) Treichel, beloved member of the Alpha-1 community for many years and one of the pioneer patients for augmentation therapy, in the evening of Sunday,...
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A good age: Denied a lung transplant, she keeps on trekking

Tuesday, September 11, 2018
In her determination, Alyce Yout has a compelling courage and buoyancy. After living with lung disease for 26 years, the former pediatric nurse had high hopes for a lung transplant last fall. “We began the journey to a transplant after...
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Sharp drop in portable oxygen access blamed on provider pay changes

Monday, September 10, 2018
A coalition of pulmonary health groups called on the Centers for Medicare & Medicaid Services (CMS) to change its supplemental oxygen reimbursement policy to remove liquid oxygen from competitive bidding requirements. The American Lung...
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New advances in gene therapies for rare diseases

Friday, August 31, 2018
The U.S. Food and Drug Administration (FDA) recently approved Onpattro (patisiran) infusion for the treatment of peripheral nerve disease (polyneuropathy) caused by hereditary transthyretin-mediated amyloidosis (hATTR) in adult patients. This...
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Alpha-1 Foundation leadership transition

Wednesday, August 22, 2018
The Alpha-1 Foundation Board of Directors is pleased to announce that Miriam O’Day has been named as interim CEO of the Alpha-1 Foundation. Ms. O’Day has served the Foundation with distinction for nearly twenty years. The Board is...
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Alpha-1 Foundation earns 8th consecutive 4-star rating from Charity Navigator

Wednesday, August 22, 2018
The Alpha-1 Foundation has earned its eighth consecutive 4-star rating from Charity Navigator, an accomplishment that only select charities achieve in the U.S. The Foundation earned its top score based on Charity Navigator’s evaluation of...
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Orphan Drug Designation granted to Bronchiolitis Obliterans treatment

Friday, August 17, 2018
Onspira Therapeutics announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation to its investigational product, OSP-101, for the treatment of Bronchiolitis Obliterans (BO). BO is a progressive inflammatory condition...
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Family of liver donor meets transplant recipient

Friday, August 10, 2018
On June 19, Cletus Schnieders was eating dinner with his wife Carrie and their three children (sons Trenton, 9, and Cletie, 4, and daughter Samantha, 2) in their Cincinnati home when he started to choke. Photo: Facebook/Carrie...
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Living donor saved her own son’s life

Tuesday, July 31, 2018
Dara Kass is an emergency physician in New York, but she did not need to be a doctor to know that something was going on with the third child, Sammy. At birth, the baby was smaller than his two siblings. He barely grew and was lethargic; his skin...
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The Assistance Fund opens new program for Alphas

Monday, July 30, 2018
The Assistance Fund, an independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs, announced the launch of a new program for individuals with Alpha-1 Antitrypsin Deficiency...
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