November is Alpha-1 Awareness Month, a 30-day initiative that encourages the Alpha-1 community to share stories and resources while raising funds to support the search for a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1). This year’s theme celebrates the Alpha-1 Foundation’s (A1F) 30th anniversary. Honoring three decades of advancing research, raising awareness, and building a strong, supportive community of Alphas through Alpha-1 Support Groups, Alpha-1 specialists in Clinical Resource Centers (CRCs), legislators on Capitol Hill, and the entire Alpha-1 community.
A1F shares a vision framed by four powerful words that define its work: Insight, Innovation, Investment and Impact. Throughout the awareness month campaign these words serve as pillars in all the messaging.
The A1F Virtual Walk is an annual Building Friends for Cure (BFC) fundraising activity that is carried out in conjunction with Alpha-1 Awareness Month. Alphas can connect with friends and family to raise funds and awareness . Participants can walk for themselves, a loved one, a friend, or in memory of someone special. Every step helps to raise awareness and to fund vital Alpha-1 research and related programs.
As part of this year’s walk, A1F is introducing a personalized button that can be worn and shared, highlighting who you are walking for. Registration is $30 and includes the official 2025 A1F Virtual Walk long sleeve t-shirt. To register, visit give.alpha1.org/VirtualWalk25
Throughout the month of November, A1F will share important Alpha-1 facts and ways to get involved with Alpha-1 awareness efforts through its social media channels (Facebook, Instagram, X and LinkedIn) as well as on its website .
On the awareness month dedicated page various free awareness resources are available, such as the Alpha-1 Awareness Digital Toolkit that includes social media backgrounds, messaging, and shareable graphics and a printable awareness toolkit to download calendars, guides, flyers, and proclamation letters to help raise awareness for Alpha-1. Using the hashtag #Alpha1Awareness, and #A1FVW25 for A1F Virtual Walk posts, users can help expand the reach and message of the Alpha-1 community.
This year A1F is amplifying awareness among medical institutions, colleagues, and future clinicians. A1F has created a series of four weekly messages on the following themes: Testing, Guidelines, Research, and Education. A1F will distribute the messages to the full Clinical Resource Center (CRC) community and ask each CRC to forward the approved message with a brief personal note to their institution, colleagues, and residents. This is a simple but powerful way to raise visibility during Alpha-1 Awareness Month, highlight the work of A1F CRCs, and expand the reach of Alpha-1 education beyond the immediate network.
A1F will also be exhibiting and attending the American Association for the Study of Liver Disease (AASLD) Conference in Washington, DC. A1F will host its annual Grants Award Reception during The Liver Meeting honoring the well-deserving 2025 awardees in the liver space. The Grants Advisory Committee (GAC) awarded 21 in-cycle grants to well-deserving applicants totaling over $3.75 million. The A1F research portfolio continues to balance its focus on lung and liver research, with 64% focused on lung, 36% focused on liver.
The European Parliament will be hosting an event online for Alpha-1 Awareness Month on November 20th from 8:30 to 10:30 CET (3:30 to 5:30 am EST). MEP Olivier Chastel will lead discussions on European policies affecting Alpha-1 patients, including the upcoming Biotech Act and the implementation of the SoHO regulation. Register here.
A1F will continue to advance two advocacy priorities during Alpha-1 Awareness Month: permanent Medicare coverage of home infusion for Alpha-1 augmentation therapy and stronger access to supplemental oxygen, including liquid oxygen, for those who need it most.
H.R. 2243: The John W. Walsh Alpha-1 Home Infusion Act of 2025. The legislation would allow eligible Medicare beneficiaries with Alpha-1 to receive their weekly augmentation infusions at home under qualified home infusion suppliers and clinical oversight. Named for our community’s tireless champion John W. Walsh, H.R. 2343 ensures Medicare covers home infusions for Alpha-1 augmentation. Now is the time to ask your Representative to cosponsor.
Take action with one click via A1F’s Advocacy platform: https://mstr.app/15ab3afd-10c4-4ffd-8fc6-239cbbc7823e
H.R. 2902, the Supplemental Oxygen Access Reform (SOAR) Act of 2025, to improve access to oxygen. The bill increases payment for liquid oxygen and recognizes a home visit by a respiratory therapist as an essential part of patient education. The bill would remove oxygen from Medicare’s competitive bidding program beginning January 1, 2026, update payment policy, and protect beneficiary choice and access.
Take action with one click via A1F’s Advocacy platform: https://mstr.app/aa36fb24-0a8a-4f1f-80a2-34afe2439057
A1F finds itself at a pivotal, and potentially transformative, point in its 30-year history. The synergy of science, medicine, and technology, combined with A1F leadership over the last three decades has the Foundation primed to deliver impact that will provide hope for all Alpha-1 patients and their families.
About the Alpha-1 Foundation
A1F founded in 1995, is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by the condition worldwide. The Foundation has invested over $100 million to support Alpha-1 research and programs at 130 institutions in North America, Europe, the Middle East, and Australia.
For more information, visit www.alpha1.org
Contact: Jeanne Kushner
Senior Director of Communications & Policy
(877) 228-7321, ext. 204
