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Foundation opposes repeal of essential health benefits (EHBs) in new healthcare bill

Foundation opposes repeal of essential health benefits (EHBs) in new healthcare bill
Friday, March 24, 2017
The Alpha-1 Foundation is urging members of the Alpha-1 community to contact their representatives in Congress today to oppose changes in the new healthcare bill that would eliminate essential health benefits (EHBs). These benefits include preventive and wellness services, chronic disease management and prescription drugs, among others. The U.S. House of Representatives will vote this...

Foundation opposes bill that would pressure patients to submit to genetic testing

Tuesday, March 21, 2017
The Alpha-1 Foundation’s efforts to preserve key patient protections were showcased recently when an NBC News program prominently displayed the Foundation’s logo among those of nearly 70 organizations that oppose a new healthcare...

New York Times publishes obituary on Foundation co-founder John W. Walsh

Monday, March 20, 2017
The New York Times has published an obituary on Alpha-1 Foundation co-founder John W. Walsh. John W. Walsh, who led a national campaign for a cure for a form of lung disease that killed his mother and afflicted his sister, twin brother and...

Celtic Connection honors AlphaNet, raises more than $133,000 for Alpha-1 Foundation

Thursday, March 16, 2017
The ninth annual Celtic Connection recognized AlphaNet for $50 million in contributions to the Alpha-1 Foundation. Robert C. Barrett receives his Shillelagh award from Sheila Favazza. The event’s well-known Shillelagh award was...

Mom’s fight with Alpha-1 inspires daughter to become support group leader and genetic counselor

Wednesday, March 15, 2017
At the tender age of six, Jessica Jackson began learning how to cope with Alpha-1. Jessica Jackson, right, and her mother, Cassandra Her parents called the family to a meeting at the dinner table one evening. There, they announced to Jackson...

Alpha-1 Canada pays tribute to Foundation co-founder John W. Walsh

Tuesday, March 14, 2017
Alpha-1 Canada, a not-for-profit organization that provides information and support to people affected by Alpha-1 in that country, has issued a letter to the Alpha-1 Foundation that honors the legacy of Foundation co-founder John W....

Respiratory visionary leaves legacy

Wednesday, March 8, 2017
By Teresa Barnes, Alpha-1 Foundation Public Policy Working Group member More than 13 years ago, a tireless visionary emerged who would change the face of pulmonary medicine forever. At the time, John W. Walsh had been plotting his course as...

Alpha-1 Foundation announces passing of John W. Walsh, Co-Founder and Director Emeritus

Tuesday, March 7, 2017
John W. Walsh, co-founder of the Alpha-1 Foundation,  passed away surrounded by his loving family on Tuesday, March 7. John will be remembered as a visionary leader and tireless advocate for those with Alpha-1. Plans for memorial services...

John W. Walsh, whose relentless drive to cure Alpha-1 breathed life into the Alpha-1 Foundation and AlphaNet, is remembered

Tuesday, March 7, 2017
John W. Walsh, whose vision of a research foundation and a patient services organization for people with Alpha–1 Antitrypsin Deficiency led to today’s highly successful and influential Alpha–1 Foundation and AlphaNet, passed away...

Global Patient Congress and Research  Conference in Lisbon to take place April 5-8

Friday, March 3, 2017
The 6th Alpha-1 Global Patient Congress and 3rd Research Conference on Alpha-1 Antitrypsin will be held April 5-8, 2017, at the InterContinental Hotel in Lisbon, Portugal. Gonny Gutierrez  The Research Conference theme will be...

"Meet The Experts" forum to discuss research and advocacy in treatment for lung disease

Thursday, March 2, 2017
WASHINGTON, DC – The American Thoracic Society’s Public Advisory Roundtable (ATS PAR), will present the eleventh annual patient/family forum, “Meet the Experts” on May 20 in Washington, D.C. Robert Sandhaus, MD,...

Alpha highlights research participation for Rare Disease Day

Tuesday, February 28, 2017
Ken Benson is a firm believer in research. Ken Benson For years, the lung- and liver-affected Alpha has allowed scientists to closely examine how his body works in study after study. He has participated in the COPDGene study at the...

Celtic Connection to honor AlphaNet for $50 million in contributions

Monday, February 27, 2017
The Celtic Connection, an annual Building Friends for a Cure event to raise awareness of Alpha-1 and generate funding for research and related programs of the Alpha-1 Foundation, will honor AlphaNet this year for reaching a $50 million milestone...

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