November is Alpha-1 Awareness Month, and the momentum continues as supporters across the country raise awareness, share educational resources, advocate for change, and support research that helps advance the search for a cure.
This week, we are focusing on education. Increasing awareness and understanding of Alpha-1 Antitrypsin Deficiency (Alpha-1) helps individuals and families make informed healthcare decisions, connect with appropriate resources, and advocate for their health. Education also helps healthcare professionals recognize Alpha-1 earlier and improve patient care.
The Alpha-1 Foundation (A1F) highlighted its commitment to education during Kansas City Education Day, where members of the Alpha-1 community gathered to connect, learn, and hear updates on topics affecting those impacted by Alpha-1. Educational events like these help strengthen community connections while providing valuable information and resources for patients, caregivers, and families.
A1F also participated in The Liver Meeting®, hosted by the American Association for the Study of Liver Diseases (AASLD). The annual meeting brought together researchers, clinicians, and healthcare professionals from around the world to discuss advances in liver disease research, diagnosis, and treatment. As Alpha-1 remains a leading genetic cause of liver disease, opportunities like AASLD help increase awareness and foster collaboration within the broader medical community.
A1F also hosted its annual AASLD Grants Award Reception in Denver, Colorado, recognizing liver researchers whose work is helping advance scientific understanding of Alpha-1 and support future discoveries in liver disease and related research. Jon Hagstrom, Chair of the A1F Board of Directors and Dr. Virginia Clark, A1F Board of Directors Physician Director introduced and acknowledged the grant award recipients in attendance. Thank you Katrin Panzitt, PhD from Medical University of Graz, Austria, Martin Wagner, MD from Medical University of Graz, Austria and Shah Hussain, PhD, MBA from University of Alabama at Birmingham, USA for your continued dedication to the A1F mission.
In addition, A1F participated in the Gold Coast Conference, continuing efforts to engage healthcare professionals and researchers while helping ensure Alpha-1 remains part of important conversations surrounding respiratory health, rare disease care, and emerging research.
Advocacy efforts also continue throughout Awareness Month. A1F remains focused on advancing the John W. Walsh Alpha-1 Home Infusion Act of 2025 (H.R. 2343) and the Supplemental Oxygen Access Reform (SOAR) Act (H.R. 2902/S. 1406). Thank you to everyone who has taken action by contacting elected officials and sharing the importance of policies that improve access to care for the Alpha-1 community. We are currently at 61 co-sponsors.
A special thank you to Karen Fisher-Nguyen, who met with Maryland state representatives to share her Alpha-1 story and provide educational resources about the condition. Her efforts were recognized with a citation from the Maryland General Assembly, helping bring additional awareness to Alpha-1 within her community.
Awareness efforts are taking place in communities across the country in many ways. In Pennsylvania, Karin Pittsley spent the weekend sharing information about Alpha-1 with neighbors while walking her dog, Bandit, who proudly sported an Alpha-1 bandana. Karin also placed A1F brochures and Fast Facts cards in her neighborhood lending library and promoted her upcoming Alpha-1 Awareness Walk, helping raise awareness one conversation at a time.
At the Mayo Clinic in Rochester, Minnesota, members of the Pulmonary and Hepatology teams recently came together for a 2.6-mile walk in support of Alpha-1 Awareness Month. One memorable moment came when 7-year-old Logan inspired a neighbor to scan the QR code on his Alpha-1 shirt and make a $25 donation to A1F, demonstrating how small interactions can help raise awareness and support the mission.
In Massachusetts, Team Mitch continues to build momentum throughout Awareness Month. Team members recently spent an afternoon spreading awareness along Long Beach in Plymouth and are looking ahead to their upcoming group walk at Castle Island in South Boston.
Throughout Awareness Month, participants in the 2026 A1F Virtual Walk continue to bring their communities together through fundraising, education, and awareness activities, helping support A1F’s mission while expanding understanding of Alpha-1.
A special congratulations to Stephanie Di Leo, the current leading Virtual Walk fundraiser, who is walking in honor of her aunt, Danuta Albro, while encouraging family and friends to join her efforts to raise awareness and support A1F’s mission.
One inspiring example comes from Boise, Idaho, where supporters gathered for the Idaho Alpha-1 Community Outreach Walk at Kathryn Albertson Park. Led by Diane Angell, the event welcomed 45 participants and raised $2,245 in support of A1F’s mission. Families, friends, and members of the Grifols regional team came together for a beautiful day of walking, awareness, and community engagement while educating park visitors about Alpha-1. During the team’s luncheon, Michelle Abrams was recognized for her outstanding fundraising efforts. As Diane shared, the event was truly “all in the family,” reflecting the strong sense of community that continues to drive Awareness Month activities across the country.
In Omaha, Nebraska, the Big Red Alphas brought together 25 participants at Westroads Mall for an Alpha-1 Awareness Walk. The group hosted a purple scavenger hunt for children and families while sharing information about Alpha-1 symptoms, testing, and research with community members. The team has already raised more than $1,000 and continues fundraising throughout November.
In Galesburg, Illinois, Open Arms for Alpha-1, led by Jackie English, brought together 16 supporters for a fundraiser at Pizza Ranch, raising more than $208 in support of Alpha-1 awareness and research. The event highlighted the power of family, community, and a shared commitment to finding a cure.
Thank you to everyone who has participated in Awareness Month so far. Together, we are building awareness, supporting one another, and moving the mission forward.
