Alpha-1 Foundation

Alpha-1 Foundation Alpha-1 Antitrypsin Deficiency is a genetic condition that may result in lung and/or liver disease. How exactly does it cause lung and/or liver disease?

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin (or alpha-1) that is produced by the liver. Its function is to protect the lungs from inflammation (

caused by infection or inhaled irritants). When alpha-1 protein is not released from the liver at the normal rate, it leads to a build up of abnormal alpha-1 protein in the liver, which can cause liver disease and a decrease of alpha-1 in the blood that can lead to lung disease. The most common signs and symptoms of disease caused by Alpha-1 are:

* Shortness of breath
* Wheezing
* Chronic cough & sputum (phlegm) production also
known as chronic bronchitis.
* Recurring chest colds
* Eyes and skin turning yellow (jaundice)
* Swelling of the abdomen (ascites) or legs
* Vomiting blood (from enlarged veins in the esophagus
or stomach)
* Decreased exercise tolerance
* Non-responsive asthma or year-round allergies
* Unexplained liver problems or elevated liver enzymes
* Bronchiectasis

Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1. There are about 100,000 people with Alpha-1 in the United States. Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure. For more information on getting tested go to: http://www.alphaone.org/alphas/?c=02-Get-Tested

The Elegance in Purple Dinner at the 2026 A1F National Conference was a beautiful evening celebrating the strength and u...
06/07/2026

The Elegance in Purple Dinner at the 2026 A1F National Conference was a beautiful evening celebrating the strength and unity of the Alpha-1 community. During a moving presentation, A1F President & CEO Scott Santarella recognized the shared impact of the Alpha-1 Foundation, AlphaNet, and AlphaDetect, highlighting the power of working together for those affected by Alpha-1. As attendees lit up the room, the evening became a powerful reminder that this community stands united in hope, advocacy, research, and support. đź’ś

The 2026 A1F National Conference is bringing together leading experts and the Alpha-1 community for impactful sessions f...
06/06/2026

The 2026 A1F National Conference is bringing together leading experts and the Alpha-1 community for impactful sessions focused on the future of research, detection, and clinical advancement. Attendees are hearing from experts during “The Future of Alpha-1 Detection” and an engaging Alpha-1 Research Panel, while A1F Scientific Director Dr. Wilson is helping break down the research process during “Research & Clinical Trials 101.” These important conversations are highlighting the progress being made and the future of care and treatment.

Tonight’s Piano Bar Glam Dinner at the 2026 A1F National Conference brought the perfect mix of music, laughter, dancing,...
06/06/2026

Tonight’s Piano Bar Glam Dinner at the 2026 A1F National Conference brought the perfect mix of music, laughter, dancing, and unforgettable memories! From glamorous looks to sing-alongs around the piano, the Alpha-1 community showed up ready to celebrate, connect, and enjoy an incredible evening together. 🎹

The 2026 A1F National Conference kicked off with inspiring opening remarks from A1F President & CEO Scott Santarella, fo...
06/05/2026

The 2026 A1F National Conference kicked off with inspiring opening remarks from A1F President & CEO Scott Santarella, followed by the “Alpha-1 Empowerment Hour,” featuring real Alphas and members of the Fred C. Walsh Speaker Bureau sharing their stories and experiences. Attendees also learned more about the Alpha-1 Research Registry and Therapeutic Development Network (TDN), and the important role these programs play in advancing research and future therapies for the Alpha-1 community.

The First Time Attendee Lunch at the 2026 A1F National Conference brought together new members of the Alpha-1 community ...
06/04/2026

The First Time Attendee Lunch at the 2026 A1F National Conference brought together new members of the Alpha-1 community for conversation, connection, and a warm welcome to the event! From meeting others with shared experiences to learning more about the resources and support available through A1F, this special gathering helped set the tone for a meaningful and engaging conference experience. đź’ś

The Emerging Therapies in Alpha-1 presentations at the 2026 A1F National Conference will highlight groundbreaking rese...
06/03/2026

The Emerging Therapies in Alpha-1 presentations at the 2026 A1F National Conference will highlight groundbreaking research and innovative treatments that are shaping the future of Alpha-1 care and bringing us closer to a cure. These sessions offer a unique opportunity to hear directly from experts about the latest therapeutic developments and what’s ahead for the Alpha-1 community. Please note that these presentations will not be available on demand after the conference, making live attendance especially important. Learn more and register: https://alpha1.org/national-conference/

The Platinum Sponsor Presentations at the 2026 A1F National Conference offer attendees the opportunity to hear directl...
06/01/2026

The Platinum Sponsor Presentations at the 2026 A1F National Conference offer attendees the opportunity to hear directly from industry leaders about the latest advancements, research, and innovations shaping the future of Alpha-1 care. To tune in, register as a virtual attendee today: https://alpha1.org/national-conference/

The 2026 Bettina B. Irvine Invitational brought supporters together once again in support of the Alpha-1 community, help...
05/31/2026

The 2026 Bettina B. Irvine Invitational brought supporters together once again in support of the Alpha-1 community, helping raise critical funds for research, education, and patient programs. Thank you to everyone who helped make this impactful event possible. Read more:

The Alpha-1 Foundation’s 13th Annual Bettina B. Irvine Golf Invitational returned to Greenwich on May 13th, bringing together supporters, advocates, and community [...]Read More... from 2026 Bettina B. Irvine Invitational Classic

Dr. Kohli will present “Alpha-1 Pediatric Liver 101” at the 2026 A1F National Conference , offering valuable insight in...
05/30/2026

Dr. Kohli will present “Alpha-1 Pediatric Liver 101” at the 2026 A1F National Conference , offering valuable insight into pediatric liver disease and its impact on children with Alpha-1. Virtual registration is still available, allowing attendees to learn from leading experts and stay connected with the Alpha-1 community from anywhere. Register today: https://alpha1.org/national-conference/

Ice Cream for Alpha-1 is a fun and meaningful way to bring people together while supporting A1F this spring and summer. ...
05/29/2026

Ice Cream for Alpha-1 is a fun and meaningful way to bring people together while supporting A1F this spring and summer. Whether hosted at home, work, school, or a local park, every fundraiser makes an impact. Last year, Betsy Scher and the Highland Park, Illinois community hosted an Ice Cream for Alpha-1 event featuring gelato, affogatos, and connection, raising more than $2,000 for the Alpha-1 community. Interested in hosting your own event? Contact Irene Calderon, A1F Development Manager, at [email protected] to learn more. https://alpha1.org/ice-cream-for-alpha-1/

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