2025 PROGRAM REPORT
& SCIENCE
Alpha-1 Research Registry...............................................................................................
Clinical Resource Centers (CRCs)...............................................................................
Therapeutic Development Network (TDN).........................................................
Research Grants and Awards........................................................................................
Detection of Alpha-1............................................................................................................
Alpha-1 Biomarkers Consortium (A1BC) &............................................................
Alpha-1 Research Biorepositories
Conferences and Forums................................................................................................
DRIVING PROGRESS THROUGH INSIGHT, INNOVATION, INVESTMENT, AND IMPACT
Over the past year, the Alpha-1 Foundation (A1F) has advanced its mission with unprecedented momentum, fueled by insight into patient needs, innovation across research and care, investment in groundbreaking science, and measurable impact in the community From recordbreaking engagement at events and the annual A1F National Conference, to surpassing over $100 million in research funding, to strengthening public policy initiatives and revitalizing patient support networks, every milestone reflects a deep commitment to transforming the patient journey worldwide.
As the leading global resource for education, advocacy, research, and support in Alpha-1 Antitrypsin Deficiency (Alpha-1), A1F is not only shaping today’s conversations but also setting tomorrow’s standards. A1F’s programs push beyond existing data, detection, and patient care, continually raising the bar for the Alpha-1 community on what is possible in the rare disease arena.
At the heart of this progress is a dynamic network of patients, volunteers, clinicians, researchers, industry partners, and donors whose dedication drives meaningful outcomes Their expertise and collaboration spark innovative solutions and ensure that care remains patient-centered Together, this community is expanding knowledge, advancing therapies, and delivering hope
Now, as A1F commemorates its 30-year milestone, it stands at a pivotal juncture Guided by insight, powered by innovation, sustained by investment, and measured by impact, the path forward promises transformative change for patients and families across the globe
A1FStaffatthe2025A1FNationalConference
ALPHA-1 RESEARCH REGISTRY: HARNESSING
DATA FOR IMPACT
The Alpha-1 Research Registry represents one of the most powerful expressions of insight and innovation in the organization’s work Originally conceived as a natural history study, it has evolved into a comprehensive hub connecting patients and researchers, addressing one of rare disease research’s greatest barriers: finding and engaging patients eligible for clinical studies The Alpha-1 Research Registry has been able to successfully recruit for 9 research studies
By recruiting more than 550 new participants in FY 2025, growing the Alpha-1 Research Registry to 4,231 patients and family members, the organization has built an invaluable resource that accelerates the pace of discovery.
The Alpha-1 Research Registry also serves as the backbone of the Therapeutic Development Network (TDN), providing robust patient data and enabling precise study matching. Its infrastructure allows for targeted recruitment, ensuring that queries align with specific study criteria. This innovation has already increased clinical trial participation and moved new therapies closer to reality
550+ Alphas & family recruited in FY 2025 4,231
1,300+ Participants that are ZZ Alphas >50%
Total participants in the Alpha-1 Research Registry
Reporthaving deficientalleles (ZZ,SZ,FZ,FF,SS,MF,Znull,Mnull, Snull,ZMheerlen,ZMmaltonor otherraredeficientalleles)
Alpha-1 Research Registry Patient Enrollment
Genotype Distribution Among Alpha-1 Research Registry Participants
Email Success Metrics
Total Inquiries Referral to Sites
UnopenedEmails
Abstracts Accepted for Poster / Presentation FY 2025
2024 European Respiratory Society (ERS) International Congress
2024 American College of Chest Physicians (CHEST) Annual Meeting
2024 American Association for the Study of Liver Diseases (AASLD) The Liver Meeting
2025 European Association for the Study of the Liver (EASL) International Liver Congress
2025 American Thoracic Society (ATS) International Conference
LOOKINGAHEAD:Alpha-1ResearchRegistry
TheAlpha-1ResearchRegistrywillcontinuetoexpanditsreachandfunctionality,ensuringthat no eligible patient goes unconnected to research By refining recruitment strategies, strengtheningitsroleinclinicaltrialreadiness,andprovidingessentialinsightstoinvestigators, theAlpha-1ResearchRegistrywillremainacornerstoneofimpactintheyearstocome
CLINICAL RESOURCE CENTERS: EXPANDING ACCESS AND EXCELLENCE
A1F’s one hundred and one Clinical Resource Centers (CRCs) in the US and Canada, including 115 physicians specializing in adult and pediatric liver and lung care, deliver comprehensive, patientcentered treatment A1F CRCs not only provide expert care but also serve as critical gateways for Alpha-1 Research Registry and Therapeutic Development Network participation, accelerating clinical progress while enhancing day-to-day outcomes for patients
Recently, A1F conducted a CRC Survey to gather insights from each center. The feedback is shaping strategies to enhance services, expand capabilities, and ensure CRCs continue to meet patient and research community needs effectively.
Looking forward, the organization is developing a CRC Scorecard, a new tool that will evaluate performance and outcomes across centers. This initiative ensures accountability, consistency, and the highest standards of patient care across the network.
The upcoming CRC Forum in 2026 will bring centers together to share updates on clinical trials, present scorecard findings, and exchange knowledge to strengthen collaboration
LOOKINGAHEAD:CRCs
Future priorities include expanding multidisciplinary teams and bringing together pulmonologists,hepatologists,nutritionists,andmentalhealthexpertstodelivertrulyintegrated care TheCRCAccessProgramwillalsoexpand,ensuringmorepatientsbenefitfromspecialized expertise These investments will drive greater innovation and impact, reinforcing the CRCs as pillarsofbothpatientcareandresearch.
THERAPEUTIC DEVELOPMENT NETWORK: ACCELERATING THE DEVELOPMENT OF
NOVEL THERAPIES
The Therapeutic Development Network (TDN) exemplifies how innovation and investment intersect to produce impact. By uniting leading researchers, clinicians, and biopharma partners, the TDN creates a streamlined platform for drug development and clinical trial recruitment. Through strategic use of the Alpha-1 Research Registry and CRC network, the TDN identifies and enrolls the right patients, matches trials to the most capable sites, and ensures scientific rigor and patient-centered care. This integrated approach accelerates progress from lab discovery to therapeutic reality.
45%
Newly enrolled into the Alpha-1 Research Registry
80%
Collection of medical records for Alpha-1 Research Registry
93%
Transfer TDN data to Alpha-1 Research Registry
21 Centers 185 Participants
Multiple Industry partners in business development phase
RESEARCH GRANTS AND AWARDS: INVESTING IN BREAKTHROUGHS
In FY 2025, A1F directed more than $38 million in peer-reviewed research grants, funding cuttingedge projects across 130 institutions in 14 countries To date, it has invested over $100 million in research, making it the world’s leading funder in Alpha-1 research This investment is advancing the next generation of discoveries, from new therapeutic targets to improved understanding of disease mechanisms
Research Highlight –Dr. Jeffrey Teckman
A new study led by Saint Louis University identified biomarkers in high-risk infants with Alpha-1 Antitrypsin Deficiency (Alpha-1), allowing clinicians to predict which children may need lifesaving interventions
This breakthrough follows the 2022 discovery of the first potential adult treatment for Alpha-1, moving closer to a future where liver transplants are no longer the only option.
2024-2025 GRANT RECIPIENTS
In-CycleResearchGrantsRecipients
Theresearchgrantswereawardedin-cycleforbasicandtranslationalresearchandprovidefundsto encouragethedevelopmentofnewinformationthatcontributestotheunderstandingofAlpha-1.
Lisa Cabrita, PhD University College London
Molecular Studies of Antitrypsin's Folding and Polymerisation in the Endoplasmic Reticulum
Nilsson Holguin, PhD Icahn School of Medicine at Mount Sinai
Treatment of Osteoporosis from Alpha 1 Antitrypsin Deficiency
Craig Hersh, MD, MPH
Brigham and Women’s Hospital
Characterizing the Lung
Inflammatory Milieu in Alpha-1 Antitrypsin Deficiency
Maurizio Molinari, PhD
Fondazione per l'Istituto di Ricerca in Biomedicina Bellinzona
Understanding the Molecular Mechanisms of Lysosomal Clearance of ATZ Polymers
Emily Moser, PhD
University of Florida
Alpha-1 Antitrypsin Promotes Vaccine Antibody Responses
Nunzia Pastore, PhD
Fondazione Telethon
Unveiling the Role of SOX9 in the Liver Pathology of AATD
PilotandFeasibilityGrantRecipients
David LaFon, MD University of Alabama at Birmingham
Genetic Variation in IgG as a Mechanism for Immune Deficiency and Exacerbations in AATD
Pasquale Piccolo, PhD
Fondazione Telethon
Development of RNA Aptamers
Inhibiting Polymerization of Mutated Z Alpha-1-Antitrypsin
Vickram Tejwani, MD
Cleveland Clinic Foundation
Exposures Among Those with SERPINA1 Gene Variants
Emily Van't Wout, MD, PhD
Leiden University
The Role of Polymers in Repair and Regeneration in AATDRelated Emphysema
The objective of the Pilot and Feasibility grants are to provide funds to encourage the developmentandtestingofnewhypothesisand/ornewmethodsinresearchareasrelevantto Alpha-1.
Emma Leacy, PhD
Royal College of Surgeons in Ireland
Comprehensive Lipidomic Profiling of Bronchoalveolar Lavage Fluid (BALF) in AATD
Postdoctoral Research Fellowship Grants
Debananda Gogoi, PhD
Royal College of Surgeons in
Leandro Soria, PhD
Fondazione Telethon
Ureagenesis as a Novel Biomarker for AATD Liver Disease
María Magallón, PhD University of Florida
John W. Walsh Career Development Grant
Shunqing Liang, PhD
University of Minnesota
Prime Editing Strategies to Address the Root Cause of Alpha-1 Antitrypsin Deficiency
Clinical Pilot Grant
Sandeep Bodduluri, PhD
University of Alabama at Birmingham
Silent Zones of Disease in Alpha-1 Antitrypsin Deficiency
Jingzhou Zhang, MD, PhD
Boston University
Genetic and Proteomic Prediction and Pathways of COPD Risk in Alpha-1 Antitrypsin MZ
Matching Grants with a Partner Organization: 2025 ATS/Alpha-1 Foundation Young Investigator Grant in Alpha-1 Antitrypsin Deficiency
Shah Hussain, PhD
University of Alabama at Birmingham
Characterizing RASCs in AATDeficient Ferrets: Implications for COPD and Distal Airway Remodeling
DETECTION OF ALPHA-1: UNLOCKING ANSWERS EARLIER
Early detection is a critical area of investment, offering patients timely interventions and improving long-term outcomes A1F has renewed its commitment to detection through education, expanded screening programs, and accessible confidential testing A1F’s approach to early detection is not just about developing new tools and technologies; it’s about creating an experience that enhances every aspect of the detection process This initiative includes educating patients and healthcare providers about the importance of early detection, improving access to screening programs, and ensuring that the latest diagnostic tools are available.
To accelerate this work, A1F launched AlphaDetect, a nonprofit subsidiary designed to unify the community around one urgent goal: ensuring no patient goes undiagnosed. AlphaDetect integrates screening into liver and lung care, will offer free genetic testing at its dedicated laboratory, and provides confidential support to patients and healthcare providers.
LOOKINGAHEAD:DetectionofAlpha-1
AlphaDetect represents an unprecedented model for rare disease detection, combining innovation with community-wide collaboration. By standardizing screening, empowering patients, and ensuring providers have access to expert support, AlphaDetect will significantly increaseearlydiagnosisrates,sparingpatientsfromyearsofuncertaintyandirreversibledamage
InauguralAlpha-1DetectionSummitinChicago
ALPHA-1 BIOMARKERS CONSORTIUM: ADVANCING BIOMARKER DISCOVERY
The Alpha-1 Biomarkers Consortium (A1BC) has successfully enrolled 270 participants for a landmark 3-year study using Alpha-1 Research Registry data to explore disease progression The PiMZ Longitudinal Cohort (PiMZ LogiC) aims to take a deeper look into lung-affected PiMZ Alphas with COPD and hopes to identify factors contributing to lung disease progression in an often-overlooked segment of Alphas With an expanded focus that now includes carriers with COPD, the study will uncover new biomarkers in blood, sputum, and imaging to predict prognosis and inform clinical trial design This investment in insight promises to reshape how patient outcomes are tracked and managed
ALPHA-1 RESEARCH BIOREPOSITORIES: FUELING INNOVATION WORLDWIDE
A1F’s Biomaterials Exchange and DNA and Tissue Bank provide global researchers with rare, difficult-to-obtain resources such as DNA, plasma, lung and liver tissues, viral vectors, and specialized cell lines Already serving academic, government, and biotech researchers, the platform accelerates therapeutic discovery and fosters collaboration Biotech companies have increasingly turned to these repositories to power innovative pipelines in search of new treatments
LOOKINGAHEAD:Alpha-1ResearchBiorepositories
AcampaignwillsoonlaunchtoexpandtheDNAandTissueBank’scollection,buildinganeven stronger foundation for global research As offerings grow, the biorepositories will become not only a source of material but also a hub for collaboration, ensuring broad impact across the biomedicalcommunity.
CONFERENCES AND FORUMS: SHARING INSIGHT, INSPIRING IMPACT
Through conferences, workshops, and forums, A1F amplifies knowledge and fosters collaboration among physicians, researchers, patients, and partners Each year, thousands engage with A1F at major national and international meetings, where insights into cutting-edge research and emerging technologies spark innovation across the field
A1F’s scientific conferences address special topics to advance understanding of the biology of Alpha-1, thereby identifying new treatment targets, critical issues in disease management including detection and ethical issues. The meetings serve as a forum for stakeholders from academia, industry, government and regulatory agencies, and patients to obtain input and advice from those who will regulate and fund clinical research, and/or benefit from the scientific initiatives.
The 7th Global Research Conference convened on April 4, 2025 in Lisbon, Portugal. This conference brought worldwide Alpha-1 research communities together to forge partnerships that will bring us even closer to finding a cure The conference featured two expert-led sessions that focused on the liver and the lung to present and discuss novel treatment paradigms in Alpha-1 that will accelerate research towards a cure
A1F has exhibited at major professional society meetings, including the American Thoracic Society (ATS) International Congress, European Respiratory Society (ERS) International Congress, American Association for Respiratory Care (AARC) Congress, American Association for the Study of Liver Diseases (AASLD) Annual Meeting, and the National Institutes of Health (NIH) Rare Disease Day.
LOOKINGAHEAD:ConferencesandForums
Futureconferenceswillexpandopportunitiesforcollaboration,strengthentheexchangeofideas, and reinforce the organization’s role as a trusted leader in education, advocacy, and research. Thesegatheringswillcontinuetoinspireactionanddriveprogressfortheentirecommunity
TheGordonL.SniderCriticalIssues(GLS)Workshopsaresingle-topicmeetingsdesignedtofoster expertexchangeandanswerkeyquestionsorsparknewinvestigation The28thGLSWorkshop, titled“AATPolymers:DiseasePathogenesis,Detection,andTherapeuticTargeting,”tookplacein October 2025 and brought together researchers, clinicians, patients, donors, industry representatives,andacademia.The29thGLSWorkshopwillbeheldinspring2026,withitstopic announcedsoon
A1F NATIONAL CONFERENCE
The A1F National Conference stands as the most significant annual gathering for the Alpha-1 community It is a space where insight fuels understanding, innovation is shared, investment in education is prioritized, and measurable impact is created for patients and families Over three transformative days, attendees engage in scientific presentations, educational workshops, and interactive Q&A sessions that connect them directly with leading experts
This year, the Emerging Therapies session was especially powerful, offering a forward-looking view of research pipelines and clinical trials that bring new hope to patients For the first time, a dedicated Q&A session allowed patients to ask their own questions about therapies in development and acted as an essential step toward empowering individuals with knowledge about the future of treatment.
Recognizing the importance of early engagement, the organization awarded scholarships to firsttime attendees and newly diagnosed individuals. This strategic investment ensured that those who needed insight the most could access it, building a foundation of education and community support at the earliest stage of their journey. The result was a ripple effect of impact, as these attendees left better equipped to manage their condition, advocate for themselves, and stay connected with the broader Alpha-1 community.
834
Total conference attendees in person & virtually 9% Increase in in-person attendance from 2024
VirtualConferenceParticipation
TheVirtualEnvironmentwasopenfor30days post-conferenceforondemandviewing
Duringthattime,therewere:
6,058Contentviews&impressions
2,556Webinarviews
84% of attendees were patients & family 33% of attendees were first-time attendees of the conference
A1F NATIONAL EDUCATION SERIES
Through the A1F National Education Series, patients, families, and caregivers gain access to focused one-day programs that deliver medical expertise, practical resources, and opportunities to connect These A1F Education Days are designed with insight in mind and tailored information is provided to first-time participants to match their interests, ensuring every attendee leaves with relevant, actionable knowledge
By integrating a Clinical Resource Center (CRC) tour into each event, A1F has strengthened connections between patients and local medical teams This innovative addition allows participants to meet the clinicians leading research and care in their region, transforming education into real-world partnerships.
To expand reach, a virtual platform continues to ensure accessibility for those unable to attend in person. The use of engagement tracking provides valuable insight into community needs, allowing the organization to identify new leaders and volunteers. This intentional investment in cultivating leadership has already yielded a stronger, more connected community whose collective impact continues to grow.
1,114
Total attendees in FY 2025
74% Were patients & family members
18% Were first-time attendees
PROFESSIONAL EDUCATION
A1F is equally committed to advancing the knowledge and practice of healthcare professionals Through collaborations with leading medical institutions, A1F delivers accredited continuing education on essential topics including diagnosis, testing, therapy, and long-term management By offering free online courses with contact hours for nurses and nurse practitioners, A1F invests in equipping providers with the tools they need to elevate standards of care
Grand rounds, both virtual and in-person, provided opportunities for Clinical Resource Center physicians to share clinical insights, fostering innovation in practice and expanding awareness across health systems These initiatives extend beyond professional growth and directly influence earlier detection and improved patient outcomes.
Respiratory Therapist Continuing Education
815+ Medical providers have completed since inception
Continuing Medical Education (CME) program with Cleveland Clinic
5,040
Medical providers taken the courses since last year
45 Internal medicine and other medical sub-specialties
28% Claimed continuing credits
LOOKINGAHEAD:ProfessionalEducation
22 Countries represented
By strengthening partnerships with institutions like Cleveland Clinic, and recommitting to exhibitingatleadingmedicalconferences,A1Fensuresthatthemessageofearlydiagnosisand patient-centered care resonates widely. These strategic investments translate into long-term impact, embedding Alpha-1 awareness within the healthcare landscape and inspiring new collaborationsthatwillshapefutureinnovation
ALPHA1.ORG
A1F’s website has become a central hub for insight, innovation, investment, and impact while serving patients, families, caregivers, providers, researchers, and partners worldwide It offers educational resources for the newly diagnosed, referral pathways to Clinical Resource Centers, professional tools for clinicians, and funding opportunities for researchers
This year, we enhanced the site by creating targeted interest groups within our database system This innovation allows us to tailor messaging and resources to the specific needs of each audience, ensuring that communication is both relevant and effective We also leveraged Google Ad Grants and SEO services to expand visibility, while LinkedIn engagement significantly increased and broadened our professional reach and strengthened connections across industries.
499K
Total website views
112K+
Visits to homepage
12K+
Liver Disease visits
ALPHA-1-TO-ONE MAGAZINE
The Alpha-1-To-One Magazine continues to be the community’s most valued resource, consistently rated highest in our community-wide survey With over 32,500 printed copies distributed and thousands more accessed digitally, the publication delivers insight into research, patient stories, and advocacy updates
This year, we expanded the Alpha-1-To-One Magazine into a larger issue with a refreshed design and structure, enhancing both readability and depth The editorial board, comprised of patients, physicians, and researchers, ensures content reflects the evolving needs of the community These strategic enhancements represent an investment in communication, enabling the Alpha-1-ToOne Magazine to remain both innovative and impactful in uniting and informing the Alpha-1 community.
32,500
Copies disseminated per issue
3X
Issues published per year
A1F VIDEO LIBRARY
The A1F Video Library has grown into a dynamic archive of presentations from our A1F National Conference, A1F Education Days, and webinars. Accessible globally, it provides patients, caregivers, and leaders with on-demand expertise that delivers insight to those who need it most. This year, an A1F 30th anniversary video was added, highlighting A1F’s long-term impact and the key players who have advanced progress over three decades. Increased access across the board demonstrates the value of this resource, as more community members utilize the Video Library for education and empowerment.
EDUCATIONAL BROCHURES
Educational brochures and materials provide validated medical information and are designed to increase knowledge and promote positive practices related to Alpha-1 testing, diagnosis and care among Alphas, their families, those at risk for Alpha-1 and healthcare professionals
Recognizing the importance of consistent branding, all educational brochures have been redesigned to reflect A1F’s modern identity This initiative strengthens trust and ensures accurate, accessible information reaches Alphas, families, and providers alike By investing in design and clarity, A1F expands the brochures’ impact, making them recognizable, credible tools for education worldwide
COMMUNITY CURRENTS E-NEWSLETTER
Community Currents, A1F’s monthly e-newsletter, provides timely updates on research, programs, and opportunities for involvement A complete redesign has refreshed its look and usability, aligning it with our brand and ensuring clarity for readers With this investment, Community Currents continues to drive engagement and extend A1F’s impact on a consistent, monthly basis A1F was excited to launch the new Luminate Online platform using the new stationery for the monthly e-newsletter. This new platform increased the total reach of constituents in the database.
PATIENT SUPPORT NETWORK
The Patient Support Network strengthens local and regional connections, building leaders who extend education, advocacy, and community outreach Regional support group meetings this year took place in Salt Lake City, Indianapolis, Birmingham, Phoenix, and Omaha with each representing a meaningful impact on local engagement
Support Group Leader training in Miami provided direct interaction with CRC staff and researchers, inspiring new ideas and strengthening leadership A virtual training in December helped to expand reach, while in-person training will return to Miami in 2026
The peer guide program has also grown, with 70 trained guides available to support patients at every stage of their journey. It is this investment in a shared experience that fosters confidence and hope across the community.
DIRECT PATIENT SUPPORT
Through programs such as the Patient Information Line Emergency Relief Fund Oxygen Travel
Peer Guide Program
The Peer Guide Program connects a newly diagnosed Alpha, or someone whose life has been affected by Alpha-1, to another Alpha with a similar set of circumstances A1F currently has over 70 peer guides available, ranging in experiences from newly diagnosed, transplantation, self-infusion, supplemental oxygen, parents of Alpha-1 kids, and caregivers
Emergency Relief Fund
The Emergency Relief Fund is a collaboration between the Alpha-1 Foundation and the National Organization for Rare Disorders (NORD) that provides financial assistance to Alphas and their families Support of up to $500 is available to pay for basic and urgent needs not covered by insurance premiums or co-payments.
CRC Access Program
The CRC Access Program provides Alphas a one-time travel stipend of up to $500 to visit their nearest Clinical Resource Center for the first visit. This program supports access to Alpha-1 specialists who provide best-practice health management strategies and discuss augmentation therapy Program utilization increased in FY 2025 with the expansion of community engagement opportunities with their local CRCs
Oxygen Travel Assistance Program
The Oxygen Travel Assistance Program provides Alphas access to supplemental oxygen to help with travel for medical emergencies, transplant evaluation, visits to CRCs, and Alpha-1 educational events
ALPHA-1 KIDS PROGRAM
Recognizing the unique needs of Alpha-1 Kids and their families, A1F is intensifying its efforts to provide targeted support and pinpoint existing gaps and opportunities for program expansion Children with Alpha-1 face unique challenges, and our Alpha-1 Kids Program delivers specialized resources and support A dedicated virtual support group, Parents of Alpha-1 Kids (PAK), led by three mothers, provides ongoing connection and guidance for families At the A1F National Conference, 10 families received scholarships, and the Alpha-1 Kids room hosted 17 children, allowing parents to attend educational sessions This program is an investment in whole-family support that multiplies community impact
A1F is forming dedicated focus groups for parents of Alpha-1 children and young adults. These groups serve as platforms for collaborative discussions aimed at improving patient care and support. A1F is committed to expanding the Alpha-1 Kids program and ensuring that every child with Alpha-1 receives the best possible care and support. It strives to empower Alpha-1 families and advance medical knowledge in pediatric liver health, fostering a brighter future for young Alphas.
EDUCATIONAL SCHOLARSHIPS
In FY 2025, A1F awarded $25,000 in educational scholarships to 10 recipients This investment in the future empowers Alphas and family members to pursue higher education, translating into long-term impact on their lives and careers
Kali Cook, from Sterling Heights, MI, is a freshman at Macomb Community College majoring in Elementary Education
John W. Walsh, III (Jack) Memorial Scholarship
Ashleigh Cameron, from Lynchburg, VA, is a sophomore at Liberty University majoring in Nursing.
Robert J. Haggerty Memorial Scholarship
McKinley Chittick, from Harper, IA, is a freshman at Iowa State University majoring in PreVeterinary Medicine
Al C lh f
Andrew Flickenschild, from Ellington, CT, is a freshman at the University of Connecticut majoring in Biology
E. Lou Glenn Memorial Scholarship
Ava Castillo, from San Antonio, TX, is a freshman at Juniata College majoring in Biology
Terry L. Young Memorial Scholarship
Mariella Cimadella, from Flowery Branch, GA, is a graduate student at Georgia State University majoring in Occupational Therapy
Peter Smith Scholarships
James Quill Memorial Scholarships
ALPHA-1 GLOBAL
A1F continues to expand its reach, building international collaborations that unite patients, clinicians, and researchers In 2025 the International Research Conference in Lisbon featured a clinical trial roundtable, where international leaders discussed clinical trial creation
In addition, Alpha-1 Global offers a wide range of tools and resources to promote advocacy and education, helping to expand global awareness of Alpha-1 Informational brochures are currently available in five languages, with Norwegian, Danish, Swedish, and Finnish versions coming soon Over the past year, Alpha-1 Global has expanded its reach more than ever, engaging a wider range of stakeholders across Europe, including impactful collaborations with Members of the European Parliament. The Alpha-1 Foundation also broadened its global research presence by participating in additional international lung and liver conferences and hosting one of its largest Global Research and Patient Congresses in Lisbon, Portugal.
The 2025 Global Patient Congress and International Research Conference united the global Alpha-1 community, fostering collaboration, education, and engagement. The event offered a dynamic platform for patients, caregivers, clinicians, and researchers to connect through educational sessions led by international experts, networking opportunities, and access to key partners in Alpha-1.
LOOKINGAHEAD:Alpha-1Global
Building on the momentum from the recent Alpha-1 Global meetings, A1F aims to take advantage of new international alliances by growing their reach into additional underserved cornersinLatinAmerica.
In Europe, Alpha-1 Global will continue to elevate awareness by returning to the European Parliamenttoengagedirectlywithkeypoliticalstakeholders.Aspartofitsadvocacystrategy,A1F
A1F STRATEGIC PLAN
The organization’s new 3–5 year strategic plan is built on four key pillars: Detection, Informed Providers, Patient Journey and Evolving Treatment Through Key Opinion Leader interviews, patient segmentation studies, and a community-wide survey, we gathered insight that informs every step of our future strategy
By investing in data, relationships, and long-term priorities, A1F ensures sustainable growth and lasting impact The strategic plan is not just a roadmap It is a promise to align innovation and resources with the evolving needs of the Alpha-1 community
STRATEGICOBJECTIVES
ConnectandEngagetheAlpha-1Community
Unifieddetection approachtouncover anyonegenetically atriskforAlpha-1
Research
Ensureaccessto Alpha-1informed providers Supportthe patientjourney
OPERATIONALOBJECTIVES
Bridgetheevolving treatment landscape
Awareness&Policy Education PatientSupport
Communication
Marketing&Awareness
Funding
BUILDING FRIENDS FOR A CURE
Building Friends for a Cure (BFC) community fundraising continues to be a powerful driver of mission advancement Over the past year, thousands came together to support events from November Awareness Month walks to community initiatives
This year, the Alpha-1 Foundation has witnessed an incredible outpouring of support from Alphas, their families, friends, researchers, industry professionals, and the medical community The involvement of such a diverse group highlights the widespread commitment to the Foundation’s cause and underscores the importance of community in achieving its goals.
The launch of “Ice Cream for Alpha-1” brought an innovative new campaign providing families and friends with fun, accessible ways to raise awareness and funds. Similarly, Cruising for a Cure on Lake Norman, hosted by board member Erin Carr, showcased the strength of shared hope, proving that community-driven investment leads to lasting impact.
BFCisaseriesofcommunityfundraising eventssupportingAlpha-1research:
A1FRidingforaReason
A1FEscapetotheCape(E2C)
A1FVirtualWalks
IceCreamforAlpha-1
CelticConnection
ExtremeSports(Hiking,mountainclimbing)
LocalFunEvents(Bakesales)
YouthEvents(BaseballTournaments)
SPECIAL EVENTS
Through award receptions, celebrations, and fundraising events, Special Events elevate community recognition while generating support for research These gatherings celebrate progress, foster connections, and highlight the impact of individual and collective investment in the mission Special Events are opportunities to expand the A1F donor and volunteer base and raise funds for programs and research
Alpha-1 Foundation Grant Awards Receptions
Alphas, physicians, researchers, and industry partners attend these receptions to recognize newly awarded grantees for their work and dedication in Alpha-1 and their significant role in the search for a cure One event is held during the American Thoracic Society’s (ATS) annual conference for awardees of lung-focused grants, while another event is held during the American Association for the Study of Liver Diseases’ (AASLD) annual conference for awardees of liver-focused grants
Bettina B. Irvine Invitational Classic
This annual golf tournament and reception benefit transformative Alpha-1 research and advance the mission to find a cure. Attendees include Alphas, family members, senior leadership, and industry representatives
A1F ADVOCATES IN ACTION
The public policy and advocacy program demonstrates the full power of insight, innovation, investment, and impact By training patients to engage directly with policymakers, collaborating with the FDA, NIH, and C-Path, and influencing legislation on coverage and access, the organization ensures that the Alpha-1 voice is heard at every level These efforts not only protect access to care, they shape the future of innovation in clinical research and patient services
Advocates urge members of Congress, Senate and federal agencies to prioritize the needs of Alphas and those affected by rare and chronic conditions, focusing on eliminating barriers to healthcare coverage, advocating for telehealth and home infusion, ensuring access to essential medications and therapies, raising awareness of patient needs, and improving patient detection and outcomes.
Reps. María Elvira Salazar (R-FL) and Chellie Pingree (D-ME) reintroduced the John W. Walsh Alpha-1 Home Infusion Act (HR2343). If passed, certain Medicare beneficiaries living with Alpha-1 Antitrypsin Deficiency would be able to receive essential augmentation infusions at home. Reps. Chris Smith (R-NJ), Hank Johnson (D-GA), Burgess Owens (R-UT), Eleanor Holmes Norton (D-DC), Young Kim (R-CA), David Rouzer (R-NC), and Paul Tonko (D-NY) are original cosponsors of the bill.
“Access to home-based care reduces healthcare costs while giving people dignity and peace of mind as they receive quality care in their home,” said Rep Salazar “I am proud to lead this legislation, which would make life easier for Medicare patients struggling with this rare genetic disease”
A1F is also pressing for HR 2902, the Suppl Reform (SOAR) Act of 2025, to improve acc increases payment for liquid oxygen and reco respiratory therapist as an essential part of pa would remove oxygen from Medicare’s comp beginning January 1, 2026, update payme beneficiary choice and access. As of Septembe 24 cosponsors and bipartisan support; a Senat led by Senators Bill Cassidy, Mark Warner, and A
FRED C. WALSH SPEAKER BUREAU
The launch of the Fred C Walsh Patient Speaker Bureau represents a powerful investment in amplifying the patient voice Speakers are equipped with professional training, tailored messaging, and presentation tools, to ensure that personal stories are delivered with clarity, authenticity, and impact This initiative will serve as a platform for patient advocates to engage with key stakeholders, such as medical professionals, policymakers, and the general public, to foster a deeper understanding of Alpha-1, the impact on lives and the treatment journey
The recruitment strategy will focus on selecting a diverse group of Alpha-1 patients, representing different stages of the disease and age groups By incorporating patients with a wide range of treatment experiences, from newly diagnosed individuals to those who have undergone longterm treatment, A1F aims to provide a spectrum of perspectives. Their lived experiences bring essential insight to every conversation, guiding decisions in research, policy, and care.
The Fred C. Walsh Speaker Bureau will serve as a vital platform for Alpha-1 patient advocacy, raising awareness and educating healthcare professionals through the powerful experiences of Alpha-1 patients. By providing comprehensive training and recognition, A1F will ensure that volunteers feel empowered and supported in their roles, driving lasting change within the healthcare community.
This initiative ensures that innovation remains anchored in humanity, and that the Alpha-1 story is carried forward by those who know it best
The Alpha-1 Foundation (A1F) is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide.
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