ANNUAL REPORT
2018
Alpha-1 Foundation Board Members July 1, 2017 - June 30, 2018 Executive Committee Gordon E. Cadwgan, PhD*, Chair................................................................ FL James Quill*, Vice Chair............................................................................SC Elizabeth Johnson, Secretary....................................................................MA Jeanine D’Armiento, MD, PhD....................................................................NY Ab Rees*, Immediate Past Chair................................................................MO Martin R. Zamora, MD, Scientific Advisor................................................... CO
Gordon E. Cadwgan, PhD
James Quill
Elizabeth Johnson
Jeanine M. D’Armiento, MD, PhD
Ab Rees
Martin R. Zamora, MD
Noel G. McElvaney, MD, BCh, BAO
James K. Stoller, MD, MS (Org. Dev.)
Board of Directors Virginia Clark, MD..................................................................................... FL Sandra Ries Douglas+..............................................................................PA Jennifer Jopp..........................................................................................MN Ann Knebel, PhD, RN................................................................................MD Noel G. McElvaney, MD, MCh, BAO......................................................Ireland James K. Stoller, MD, MS (Org Dev)........................................................... OH Fred Walsh*.............................................................................................MA Frank Willersinn, MD*........................................................................Belgium Dell Witcher*............................................................................................AL *Denotes diagnosed Alpha-1 Antitrypsin deficient +Denotes diagnosed family member
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Virginia Clark, MD
Sandra Ries Douglas
Jennifer Jopp
Fred Walsh
Frank Willersinn, MD
Dell Witcher
• ALPHA-1 FOUNDATION
Ann Knebel, PhD, RN
The Alpha-1 Foundation has lived up to its reputation as the leading organization for Alpha-1 Antitrypsin Deficiency (Alpha-1) over the past year through innovation, new initiatives, and securing impact from medical research for the benefit of Alphas and the larger Alpha-1 community. Through enriching existing programs and establishing new approaches and initiatives, the Foundation continued to aim high and achieve key accomplishments that meet — and exceed — the requirements and expectations of the community it serves. The strength and support of our community, volunteers, researcher, clinicians, and corporate partners enables the Alpha-1 Foundation to continually push the boundaries of detection, research, advocacy, learning, and support to make a profound difference in the lives of Alphas, everywhere. Finding a cure for Alpha-1 is the ultimate goal of the Foundation, and to this end, it has invested nearly $71 million to support Alpha-1 Antitrypsin Deficiency research and programs at 112 institutions in North America, Europe, the Middle East, and Australia. This year alone, over $2.1 million was awarded for new in-cycle grants to 112 investigators. Annual in-cycle grants are a regular part of the overall research program. The Foundation was proud to announce and launch a new grant entitled, “The John W. Walsh Translational Research Award in Alpha-1 Antitrypsin Deficiency,” named after John W. Walsh, cofounder and past President & CEO of the Alpha-1 Foundation; a visionary leader who dedicated his life’s work to finding a cure for Alpha-1 Antitrypsin Deficiency and improve the lives of those affected by this genetic condition. The award was established through a contribution from Mark Brantly, MD and his wife Judy Lew, MD. Additional contributions from AlphaNet and the Alpha-1 community have increased the Award to the point where annual grants can be given for a number of years. The inaugural award was given to Joseph Kaserman, MD, the inaugural John W. Walsh Translational Research Award grantee. Kaserman is an instructor of medicine at Boston
University School of Medicine and a physician in Pulmonary, Allergy, Sleep and Critical Care Medicine at Boston Medical Center. His research study titled “Defining PiMZ AATD Liver Disease Susceptibility with CRISPR Targeted Syngeneic iPSCs” is specifically aimed at translating research findings into medical practice. ALPHA-1 FOUNDATION •
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The Foundation participated as an exhibitor at the ATS 2019 International Conference to garner interest for its various research programs and to connect with pulmonologists, respiratory therapist, and physicians from around the world. During the annual American Thoracic Society (ATS) International Conference in San Diego, California, the Foundation hosted the highly anticipated Grant Awards Reception. Over 150 guests, including Alphas, physicians, researchers, and industry partners joined at The Prado, in Balboa Park, to
recognize the newly awarded grantees. The Building Friends for a Cure (BFC) program is a critical component of the Foundation’s goal of raising awareness of Alpha-1 while providing tools to the community to raise funds to support research and related programs. These events promote community interaction between Alphas, their friends and families, investigators, industry and medical professionals, including Clinical Resource Center physicians and staff. A record of 4,400 participants this fiscal year that participated in fundraising for the Foundation. The Foundation launched a new online fundraising platform that helps encourage participants to raise more money, extend their reach and manage fundraisers. Our peer-to-peer and event fundraising software gives out BFC event participants the tools they need to be successful, social fundraisers. The 2017 Escape to the Cape gave us the opportunity to honor the co-founder of the Alpha-1 Foundation, John W. Walsh. We had our largest bike trek ever with 175 riders and volunteers raise over $250,000. The annual Celtic Connection held on March 3, 2018 hosted a gathering of 400 Alpha-1 friends and family for a St. Patrick’s Day gala in Boston, Massachusetts. The highlight of this event is the passing on of the famous “shillelagh award”, which is awarded to a prominent Alpha-1 researcher. The
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• ALPHA-1 FOUNDATION
2018 award was presented to Jeanine D’Armiento, MD, PhD, Professor in the Department of Medicine at Columbia University. A critical component of the Foundation is awareness and November is Alpha-1 Awareness Month. This year marked the 3rd annual “Alpha-1 Virtual Walk” promoting awareness of Alpha-1 throughout the month of November and raising over $110,000 for research and programs. Over 681 donors and participants rallied in their communities in all 50 states. Alphas from around the nation met with their congressional leadership in their home states and cities to obtain 30 state proclamations and 7 county, assembly and city proclamations/citations. To increase awareness, the Foundation also participated in Rare Disease Day in conjunction with the National Organization for Rare Disorders (NORD), and on February 28th the entire rare disease community came together in solidarity.
his outstanding leadership and commitment to the mission of the Alpha-1 Foundation. The Foundation also honored Beth Labasky for 17 years of outstanding commitment and dedication to the State of Florida Alpha-1 Screening and Detection Program, through which over 25,000 Floridians have been tested for Alpha-1. The city of San Francisco was the site of the 27th Annual Alpha-1 National Education Conference from June 28 through July 1. The event has 565 people in attendance, of which 30% were firsttime attendees. The overwhelming response from attendees for attending the conference continues to be education, knowledge and learning. The theme of the conference was “On Track for a Cure: Connecting the Community.” Alpha-1 Foundation Board members, over 65 Support Group Leaders, 55 AlphaNet Coordinators and Foundation staff took an active role at the conference and were a valuable resource to the attendees. Finding the cure is the Foundation’s number one goal and connecting the community is critical.
The 2018 Celebration of Life Annual Golf Classic and Dinner Reception provided a wonderful opportunity to increase fundraising and encourage our loyal donors and volunteers to reach out to their contacts to continue to spread awareness while raising necessary dollars for the Foundation’s mission. The “Havana Nights” themed dinner reception honored James Quill on his retirement after 10 years as general manager for AlphaNet and for
The Robert Seigman Memorial Scholarship provided 8 full scholarships for families to attend the National Education Conference and hosted 18 children in the Alpha-1 kids room. The Alpha-1 Kids program provides information to parents of Alpha-1 infants, children and teens about their child’s diagnosis and provides support, information and data about its impact.
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“My biggest motivation has always been the Alpha-1 community” — Jonathan Maidment
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“Jonathan Maidment’s Hiking for a Cure”, attendance at the National Education Conference gave us the opportunity to highlight his successes, engage his family and bring the community together to help surpass his goal by raising over $80,000. There were six Education Days during the FY 2018 in Tampa, Tulsa, Richmond, Omaha, Detroit, and Seattle, registering a total of 659 people. 45% of which were first-time attendees and 8% were respiratory therapists. Each Alpha-1 Education Day program agenda is developed by a committee with local Alphas, adapted to their specific requests. Building on past success, the BFC program held walks in conjunction with the Alpha-1 Education Days in Tampa, FL on February 24th and in Richmond, VA on April 28th.
The mission of finding a cure for Alpha-1 Antitrypsin Deficiency is the main force that keeps moving the Alpha-1 Foundation forward. At the same time, the Foundation continues to provide education to the Alpha-1 community and maintains a key focus on research initiatives that will lead us to achieve our main purpose. Meanwhile, Alphas are living longer, healthier and more fulfilling lives than ever before by taking advantage of disease management programs, participating in research, and making sure their voices are heard as they advocate for continued access to care and treatment.
The Foundation continues to foster relationships across the international patient, clinical and scientific communities through the Alpha-1 Global program. The program aims to strengthen awareness, earlier diagnosis, disease management, optimal access to care and streamlined communication.
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“I think it is very important for us, and also, our daughter, to be available for testing and research for the cure. We want to thank the Foundation for this opportunity to attend National Conference ;we are so grateful for the fact that we are not alone in this journey.” — Nora and Mark Kemmerer
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Financial Statements Statement of Financial Position YEAR ENDED JUNE 30, Assets Current Assets Cash and cash equivalents Investment securities Accounts receivable Due from TAP Other current assets Total current assets
2018
2017
$ 628,449 15,992,512 2,127,798 3,724 24,026
$ 732,804 15,234,111 2,482,322 2,523 19,687
18,776,509
Investment securities — non-current Investment in TAP Property and equipment, net Other assets
18,471,447
4,469,734 4,238,200 69,378 128,102
3,009,329 4,238,200 121,771 25,135
Total assets
$27,681,923
$25,865,882
Liabilities and Net Assets Current Liabilities Accounts payable and accrued expenses Due to TAP Deferred revenue
$ 1,918,124 $ 1,583,735 — 2,302 160,000 158,000
Total current liabilities
2,078,124
1,744,037
Net Assets Without donor restrictions With donor restrictions
22,835,856 2,767,943
21,290,756 2,831,089
Total net assets
25,603,799
24,121,845
$27,681,923
$25,865,882
Total liabilities and net assets
Gross Revenues By Classification For the Fiscal Year Ended June 30, 2018 Unrestricted Contributions $3,269,553 30%
AlphaNet $3,200,000 30%
Functional Expenses
For the Fiscal Year Ended June 30, 2018 Administration and General $981,696 10%
Fund raising $1,001,550 11%
Other Alpha-1 Services $806,878 9%
Alpha-1 Research Network $3,792,907 41%
Other Income $2,607,075 24%
Restricted Contributions $1,742,356 16%
TOTAL: $10,818,984
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Alpha-1 Advocacy $334,536 4%
Alpha-1 Education Days $308,959 3% Alpha-1 Global $396,605 4%
Alpha-1 Patient Support $373,281 4%
Florida Detection Program $25,346 0%
TOTAL: $9,337,030
Alpha-1 Registry and ACT Trial $730,323 8%
Alpha-1 National Conference $584,949 6%
Financial Statements Statement of Activities and Changes in Net Assets YEAR ENDED JUNE 30,
2018
2017
Changes in Unrestricted Net Assets Unrestricted Support and Revenue Contributions, bequests and grant revenues Donated shares Fundraising revenues Investment gains/(losses) Other income Net assets released from restriction — satisfaction of program restrictions
$6,130,590 2,238 336,725 1,786,207 820,868
$6,473,006 1,028 328,420 433,285 840,190
1,805,502
2,217,177
Total unrestricted support and revenue
10,882,130
10,293,106
3,792,907 25,346 584,949 730,323 334,536 308,959 373,281 396,605 806,878
3,752,642 353,413 615,260 787,930 341,989 345,526 336,121 620,719 861,917
Total program services Supporting services Administration and general Fundraising
7,353,784
8,015,517
981,696 1,001,550
881,959 956,633
Total supporting services
1,983,246
1,838,592
Total unrestricted expenses
9,337,030
9,854,109
Increase in unrestricted net assets
1,545,100
438,997
1,742,356 (1,805,502)
2,996,416 (2,217,177)
(63,146)
779,239
1,481,954 24,121,845
1,218,236 22,903,609
$25,603,799
$24,121,845
Unrestricted Expenses Program services Alpha-1 Research Network Florida Detection Program Alpha-1 National Conference Alpha-1 Registry and ACT Trial Alpha-1 Advocacy Alpha-1 Education Days Alpha-1 Patient Support Network Alpha-1 Global Other Alpha-1 Services
Changes in Temporarily Restricted Net Assets Contributions, bequests and grant revenues Net assets released from restriction (Decrease) increase in temporarily restricted net assets Increase in net assets Net assets, beginning of year Net assets, end of year
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Programs and Services The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and improving the lives of people affected by Alpha-1 worldwide. The Alpha-1 Foundation has invested more than $76 million to support Alpha-1 research and programs at more than 112 institutions in North America, Europe, the Middle East and Australia. The Alpha-1 Research Registry is a confidential database of people with Alpha-1 (Alphas) and Alpha-1 carriers. It is a resource for investigators seeking Alphas to participate in clinical trials, surveys, and other scientific and medical activities. For more information, email Randel Plant alpha1registry@alpha1.org or call toll-free 1-877-228-7321. Alpha-1 Coded Testing provides free, confidential testing administered through a research study that evaluates perceived risks and benefits of genetic testing. Email alphaone@musc.edu or call toll free 1-877-886-2383. The Support Network is comprised of over 80 support groups nationwide that provide guidance and education to Alphas and family members, create awareness in local communities, and advocate for national and state issues that affect Alphas. Four Virtual Support Groups provide a forum for topics such as Alpha-1 Kids, Pre & Post Transplant issues, Caregivers and Timely Topics. To find a support group near you, visit a1f.org/support-groups. The Patient Information Line — 1-800-245-6809 is available free of charge to anyone affected by Alpha-1 and provides support and answers to topics such as Alpha-1 testing, emotional impact, and physician and support group referrals. The Genetic Counseling Program — 1-877-228-7321 ext. 326, based at the Alpha-1 Foundation, is a free and confidential service that provides direct contact to a certified genetic counselor to provide information on the risks and benefits of testing for Alpha-1, interpreting test results, understanding the genetics of Alpha-1, and other issues associated with having a genetic illness. 11
• ALPHA-1 FOUNDATION
The Peer Guide Program — 1-877-346-3212 connects newly diagnosed Alphas with other Alphas who have a similar set of circumstances to provide emotional support, discuss resources available and assist in making choices about health. The Oxygen Fund provides oxygen equipment for Alphas in financial need to travel to physicians, hospitals, Alpha-1 educational events and other activities. For more information contact jcollins@alpha1.org or call 1-877-228-7321 ext. 251. Patient Education Programs include an annual National Education Conference which brings together over 600 Alphas, caregivers, industry representatives, clinicians, allied health care workers and scientists to discuss a wide range of Alpha-1 related topics. For more information, visit a1f.org/alpha1conference. Additionally, a series of Alpha-1 Education Days are held each year in various cities throughout the U.S. to bring patient education to a regional audience. For more information, visit a1f.org/educationdays. Recordings of these events are available via E-Education at a1f.org/education-videos. Building Friends for a Cure is a program designed to nurture ongoing friendships in the Alpha-1 community. The goal is to increase awareness and promote research which will ultimately lead to a cure for Alpha-1, by becoming involved in fundraising efforts, such as special events, letter writing campaigns, potential donor introductions, and assisting in local, national and international social and sporting events. Visit a1f.org/building-friends, contact amcbride@alpha1.org or call 1-877-228-7321 ext. 233 for more information. The Alpha-1 Kids Program is geared to the special needs and concerns of parents of children with Alpha-1. A committee of volunteer parents helps direct the program, which consists of a hotline, age appropriate informational books, a virtual support group and a parent peer guide program. For more information, visit a1f.org/alpha1-kids or contact chorsak@alpha1.org.
Programs and Services Continued Educational materials include Alpha-1-To-One Magazine, the Research Registry Update newsletter, an Alpha-1 Family Awareness Video Series and other educational materials for Alphas, their families and healthcare providers. These materials are available at our website, a1f.org/a1-publications, or call toll-free 1-877-228-7321 ext. 251. The Foundation’s Public Policy Program advocates for the Alpha-1 community by monitoring and influencing legislative and regulatory issues. Primary concerns include stimulating medical research, blood product safety, developing new therapies, screening and detection, access to care and reimbursement, federal and state funding, education, awareness and the recognition of the special needs of people with Alpha-1. For more information, visit a1f.org/action-alert. Grants and Awards: The Foundation’s peerreviewed grants program is intended to promote research that will lead to improved health for Alphas and ultimately, find a cure. We offer grants for both basic science and clinical research. For more information, contact David Fernandez at dfernandez@alpha1.org or call 1-877-228-7321 ext. 242. The Alpha-1 Foundation DNA & Tissue Bank at the University of Florida is the central storage site for DNA and tissue samples from Alphas and other donors. The Bank is a resource for researchers investigating Alpha-1 and other conditions. Researchers should contact David Fernandez at dfernandez@alpha1.org or call 1-877-228-7321 ext. 242. For other information, call toll-free 1-866-284-2708. The Targeted Detection Program promotes worldwide awareness among medical professionals, the media and public and the identification of Alphas in population groups at risk. For further information, please call 1-877-228-7321 ext. 306.
The Alpha-1 Clinical Resource Center Network is a steadily growing group of centers throughout North America that specialize in patient care and education for those with Alpha-1. Centers also offer other resources for Alphas such as support groups, transplant centers and pulmonary rehabilitation. Alphas and their physicians are encouraged to contact their regional Clinical Resource Center for information and guidance. To find an Alpha-1 specialist near you, visit a1f.org/alpha1doc. For more information, contact David Fernandez at dfernandez@alpha1.org or call 1-877-228-7321 ext. 242. Scientific Meetings, Conferences, Workshops, Working Groups and Symposia bring scientists together to focus on special topics related to Alpha-1, to advance knowledge of the genetic condition and to work toward new therapies and a cure. For more information, contact Adriana De Arce at adearce@alpha1.org or call 1-877-228-7321 ext. 269. The Alpha-1 Global Initiative works on a global, national and local level to enhance care and support for all those affected by Alpha-1. The Foundation is committed to providing reliable resources and information worldwide. As part of the Global Alpha-1 Initiative, the Foundation is creating new tools focusing on connecting Alphas all over the world with resources — and with each other. For more information, visit alpha-1global.org, contact Randel Plant at rplant@alpha1.org or call 1-877-228-7321 ext. 306. Access and Reimbursement: The Alpha-1 Foundation is committed to providing the tools and resources necessary to assist Alphas in making informed decisions about their healthcare plan and assistance program selection. Patients with questions or issues concerning access or reimbursement should contact Cathey Horsak at 1-800-245-6809 or chorsak@alpha1.org.
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The Alpha-1 Foundation’s Grants and Awards Program continues to expand the scope, number and types of grants awarded to qualified researchers.
Peer Reviewed Research Portfolio for 2018 l Our 2018 Peer Reviewed Principal Investigators are: Carrie P. Aaron, M.D.
Monica Goldklang, M.D.
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Targeting Pulmonary Perfusion in α1-Antritrypsin Deficiency
Maria Elena Miranda Banos, Ph.D. n
Dissecting immunomodulatory mechanisms of A1AT with function-neutralising monoclonal Ab
Boris Baranovski, Ph.D. n
Travel Grant to 2017 Joint Congress of the IPITA-IXACTS in Baltimore, Maryland to present the abstract entitled: “Human alpha1-antitrypsin therapy synergizes with temporary T cell depletion: modified repopulating T cell profile in concordant and discordant xenoimmune models”
Phillip Bird, Ph.D. n
Mapping pathways of human Z-antitrypsin turnover in transgenic zebrafish
Marion Bouchecareilh, Ph.D. n
Travel Grant to 16th Gordon L. Snider Critical Issues Workshop: MZ Carrier State in Alpha-1 Antitrypsin Deficiency
Russell Bowler, M.D., Ph.D. n
Proteomic signatures of COPD severity and progression in alpha-1 antitrypsin deficient patients
Russell Braeuer, Ph.D. n
John W. Walsh Memorial Travel Scholarship Award to 2017 Stem Cells and Cellular Therapies in Lung Biology and Lung Diseases Workshop to present abstract entitled: “Identification of Distinct Resident Mesenchymal Cell Populations in Adult Lungs”
Ashley Buckle, Ph.D. n
Engineering a-1 antitrypsin for augmentation therapy
Lisa Cabrita, Ph.D. n
Co-translational folding and misfolding studies of alpha1-antitrypsin
Diana Crossley, MBChB n
Functional Magnetic Resonance Lung Imaging using Inhaled Hyperpolarised 129Xenon: A pilot study of the clinical utility in Alpha One Anti-Trypsin Deficiency (AATD)
Danielle Detelich, M.D. n
Alpha-1 Antitrypsin for Prevention of Hepatic IschemiaReperfusion Injury During Normothermic Machine Perfusion
N. Tony Eissa, M.D. n
Lysosomal Origin for Emphysema
Robert Foronjy, M.D. n
Effect of Alpha-One Antitrypsin on PP2A Activity and Lung Inflammatory Responses
Patrick Geraghty, Ph.D. n n
PLTP resolves inflammation in Alpha-1 deficiency Alpha-1 antitrypsin regulates S100A9-mediated inflammation
In vivo imaging of lung apoptosis in alpha-1 antitrypsin deficiency n A Role for MMP-13 in COPD Exacerbations in the Alpha-1 Community
Daniel Hebert, Ph.D. n
Optimizing alpha1-antitrypsin folding for gene therapy
Killian Hurley, M.D., Ph.D. n
Modelling AATD Lung Disease Using Alveolar Epithelial Cells Derived from Gene-Edited iPSC
Dara E. Leto, Ph.D. n
Systematic genetic interaction map of mammalian ERAD
Ani Manichaikul, Ph.D. n
Alpha-1 antitrypsin in African Americans and Hispanics
Stefan Marciniak, M.D., Ph.D. n
Endoplasmic reticulum heterogeneity in a1-antitrypsin deficiency
Karina Serban, M.D. n
Endothelial-monocyte interactions modulated by A1AT
Richard N. Sifers, Ph.D. n
Early onset end-stage liver disease parameters and model generation
Dorota Skowyra, Ph.D. The Proteasome Load Tolerance in Alpha 1 Deficiency Katsuyuki Takeda, M.D., Ph.D. n The Effect of AAT-Fc in Experimental Emphysema n
Jeffrey Teckman, M.D. n
Adult Alpha-1 Liver Clinical and Genetic Linkage Study
Alice Turner, Ph.D. Elastin degradation in exacerbations of AATD lung disease n Improving access to augmentation therapy in AATD: the effect of augmentation on quality of life n
Brian Varisco, M.D. n
Noel G. McElvaney, MB, BCh, BAO
Cela1 is Required for Bullous Progression in AATRelated Lung Disease
Alpha-1 antitrypsin deficiency: Which is important phenotype, level, activity or all three? n Clarifying the Risk of Lung Disease in SZ AATD
Emily S. Wan, M.D.
Maurizio Molinari, Ph.D.
Yan Wang, Ph.D.
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The role of novel ER-resident autophagy receptors in clearance of polymeric ATZ
Christian Mueller, Ph.D. n
Phenotyping a Novel SerpinA1 Mouse Knockout
C. Daniel Mullins, Ph.D. n
Medical Costs of Alpha-1 Antitrypsin DeficiencyAssociated COPD in the U.S.
Alexei Ouriadov, Ph.D. n
MRI Morphomics of Emphysema in Alpha1 Antitrypsin Deficiency
Irina Petrache, M.D. n
Aspen Lung Conference’s 61st Annual Meeting entitled, “Translating Resilience and Pathogenesis to Personalized Therapy for COPD”
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Regulation of autophagy in liver disease due to Z a1antitrypsin
Emer Reeves, Ph.D. n
Platelet-neutrophil interactions in alpha-1 antitrypsin deficiency
Keith Robertson, Ph.D. n
The Epigenome as a Modulator of Alpha1 Antitrypsin Deficiency Liver Disease
Elizabeth Sapey, Ph.D. n
Improving detection of early lung disease and decline in AATD
A new drug for antitrypsin deficiency from computational pharmacological screening
Daniel J. Weiss, M.D., Ph.D. n
2017 Stem Cells and Cellular Therapies in Lung Biology and Lung Diseases Workshop
Andrew A. Wilson, M.D. n
Open Source CRISPR Gene Correction of PiZZ iPSCs
Program Grants Portfolio for 2018 l Our 2018 Peer
Reviewed Principal Investigators are: Mark L. Brantly, M.D. n n
Pasquale Piccolo, Ph.D.
Metabolomic Profiling in Alpha-1 Antitrypsin Deficiency
Alpha-1 Coded Testing Study Alpha-1 DNA and Tissue Bank
Robert Sandhaus, M.D., Ph.D. n
Director, Alpha-1 Program, National Jewish Health
Ronald Sokol, M.D. n
Childhood Liver Disease Research Network (ChiLDReN)
Charlie Strange, M.D. Alpha-1 Coded Testing Study Alpha-1 Clinical Resource Center Registry n Alpha-1 Genetic Counseling Center n n
Adam Wanner, M.D. n
Scientific Director, Alpha-1 Foundation
Mordechay Gerlic, Ph.D. n
The role of Necroptosis and IL-33 in lung pathology of A1AT deficiency
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*All grants listed above were active between July 1, 2017 and June 30, 2018.
Honor Gallery The Alpha-1 Foundation’s Honor Gallery salutes the individuals, corporations and foundations that share our commitment to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. The Foundation gratefully welcomes a number of new members who have supported our mission for the first time through their generous contributions. The Foundation acknowledges the continued support of the many long-time donors who have invested in our mission through contributions, events and workplace giving. It is with sincere gratitude and appreciation that we recognize our Honor Gallery. The following is a list of donors who contributed $500 or more between July 1, 2017 and June 30, 2018. $2.5 Million or More AlphaNet, Inc. $1 Million - $2,499,999 Grifols $500,000 - $999,999 CSL Behring, L.L.C. Shire $250,000 - $499,999 State of Florida $100,000 - $249,999 Dohmen Lifescience Services, Inc. Marcia Ruderman $25,000 - $99,999 Accredo Health Anonymous Donor Ruth and Gordon E. Cadwgan, Jr., Ph.D. Coram, Inc. Diplomat Specialty Infusion Group Facebook Payments, Inc. Presidio Networked Solutions, L.L.C. Jean-Marc Quach Sime Realty Corporation Steele Hotels $10,000-$24,999 John B. Anderson, Jr. Anonymous Donor Estate of Carmen Bartelt Midge and Greg Bertles Cynthia M. and Hugh D. Cooley Kelly C. and Kyle Aaronson Sarah A. Emerson and Edward N. Krapels Mary Louise and Henry R. Moehring Lorna and Adrian Nemcek Priority Excavating, L.L.C. RevHealth, L.L.C. Judith and Kenneth Simon Elisabeth and Alan P. Sklar
$5,000-$9,999 American Association for Respiratory Care American Respiratory Care Foundation Arrowhead Pharmaceuticals Robert C. Bueker Dicerna Pharmaceuticals Cheryl and Lawrence P. Glascott John E. Haffty Miekeleen D. Hart HBO Box Office, Inc. Kenneth A. Irvine Peg and Peter Iverson Judy F. Lew, M.D. and Mark L. Brantly, M.D. Medical Research Charities Barbara E. and David M. Perreault Philips RespirTech Proteostasis Therapeutics Holly and Donovan Quill William Richter Steward Health Care System, L.L.C. The Benevity Community Impact Fund The Ergonomic Group Robert B. Webster $1,000-$4,999 Adverum Biotechnologies, Inc. Allen & Company Alnylam Pharmaceuticals Anonymous Donors Apic Bio, Inc. Liane W. Atlas Paul F. Balser, Sr. Julianne B. and Alan F. Barker, M.D. Anya and John C. Barrett Dennis W. Bartlett, C.P.A Charles Bissell Catherine M. and Michael J. Bridgeman Marilyn T. and William F. Brown Chris A. Bucek Robert W. Chambers
Donna A. Clark, R.N. Jane-Ellen and Joseph Collins Vanessa P. and James A. Collins Joan and A. Curts Cooke Cornelia Cogswell Rossi Foundation, Inc. – John R. Raben, Jr. Bryanna A. and Andrew R. Craig Christopher H. Crane, M.D. CSL Behring – Kankakee employees Lois Desimone Delores Ann Dissinger James F. Donohue, M.D. Sally D. and John H. Dorf Erickson Solutions Group, Inc. Molly and Blair R. Evans Nona S. Feltner Catherine M. Fenner Susan and Donald C. Ferro Susan M. Flaker, PharmD Karen and Ron Fraser Joan and Oliver Garry Christina and Len Geiger David H. Glocker Igor Gonda, Ph.D. Mary and Robert L. Greene, Jr. Pat F. and Charles B. Griffis Jean M. and Michael B. Griffith Elizabeth A. and George B. Hainsworth Health Foundation of South Florida Barbara and Bob Healy Heart of West Michigan United Way Michelle Hefley Brent Hirn Marion T. and Larry L. Hoffman Bridgette Holbrook Kelly L. Hoye, M.D. Infant Nutrition Formula Organization, Inc.
Gillian L. and Marcott Irvine William Irvine Sarah M. and Richard P. Johnson Holly and Bruce Johnstone Jennifer M. and Randy P. Jopp JPMorgan Chase & Co. J.S. Sherman & Associates, Inc. Deborah H. and Richard C. Keiser Paul C. Kimball Ann B. Kirby Peter N. Klose Jeffrey C. Kruzel Beth K. Labasky James Lampasso, M.D. Carol and Thomas G. Lavell Tracy A. Leinbach Lighthouse Computer Services, Inc. Jill and Michael B. Lowe Mary C. and James W. Lyle Karen and David Maidment Sandra L. and R. Paul Maidment Glenn P. Marx Jean M. McCathern Candyce J. and Timothy J. McDonough Noel Gerard McElvaney, M.D. Elizabeth M. McKenna Kristina Melaragno Richard K. Mill Diane Mohr Angela Mosinskis National Organization for Rare Disorders Neighbor To Nation Network for Good New Boston Strategies Group LTD Michael O’Mara Optime Care, Inc. Cherie Patel
Patient Services, Inc. Plasma Protein Therapeutics Association Barbara Poresky Janet L. and Harry Pottinger Preferred Income Partners Sharon W. and Barnet Phillips Margaret L. and James A. “Jim” Quill Raising Hope for Others Jonathan W. Ray RBC Capital Markets, L.L.C. Lynne E. and Albert W. “Ab” Rees Tui and Joseph M. “Joe” Reidy Marcia F. Ritchie Denise M. Ronek RoundTower Technologies, Inc. Dorothea “Dot” and Robert A. “Sandy” Sandhaus, M.D., Ph.D. Joy C. and William J. Schaefer, Jr. Sheryl Schey John H. Schoolfield Edward P. Secunda, D.O. Lauren Seyer Nancy and Mark D. Smith Rebecca E. Snider, M.D. Shannon and Adam J. Sonnhalter William E. Stark Terry and James K. Stoller, M.D., M.S.(Org. Dev.) Pamela and Charlie Strange, M.D. Pamela and Sidney Suggs Symantec Corporation Patricia and William Tew The Cobb Family Foundation, Inc. The Cozen O’Connor Foundation, Inc. The CReM of Boston University and Boston Medical Center
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Honor Gallery continued Lori Towers Trillium Technical Truist University of Florida Alpha-1 Research Program University of Massachusetts Medical School University of Miami Pulmonary Division Pamela E. and Kenneth VanScoy Karen L. and David P. Voss John R. Wales Doris and Adam Wanner, M.D. Marshall B. Webb Dell Witcher and Brunson White Cindy and Wayne E. “Chip” Withers, Jr. Claudia and D.C. Young Your Cause, L.L.C. $500-$999 Rudolf A. Aguilar AmazonSmile Foundation Anonymous Donors Arkansas Orthopaedic Center John J. Austin Dawn R. and Robert W. Bailey Janet M. and Gene A. Baumhover Kenneth E. Benson Julie L. Berry Susan K. and Thomas H. Binnall Lyman B. Brainerd, Jr. Louise W. Bray Lynda B. Broad Jennifer A. and Tony Browne William F. Brum, Jr. Mary Buonanno
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Robert E. Burke, C.P.A. Amy E. and Alen H. Burrell Butler Buckley & Deets, Inc. Lori A. and Wayne Caswell CC Cuellar Contracting, L.L.C. Cerner Corporation Rosemary B. Chiodo Linda and Steven Cohen Susan L. Craig Crescent Street Realty Co., L.L.C. Jesse Andrew-Tye Crews, C.F.P. Jeanine M. D’Armiento, M.D., Ph.D. Barbara B. and Donald E. Davis, Jr. Jerome C. Day, Jr. Gill Deford EMC Scott L. Dillinger Amy Figueroa Fingerpaint Marketing Barbara E. and Michael J. Flintrop, M.D. Lauren and Hunter B. Fountain Gimper IV, L.L.C. Monica P. Goldklang, M.D. Jonathan C. Goldsmith Google, Inc. Greater Twin Cities United Way Charles Grice John Guptill Keith W. Harris, II Seppo Helava Alan B. Herzog Alvin C. Hoff Angela M. and Eric D. Hoglund Charmian and John Holehouse Stephen Hovey
• ALPHA-1 FOUNDATION
Nancy J. Hughes James M. Hurley Patricia L. and William A. Jackson Karen E. Jay Kathy and David A. Jerde Brandy O. and David H. Jesperson Susan G. Joffrion Elizabeth A. Johnson Johnson & Johnson Matching Gifts Program Mark C. Jones Gregory P. Judge Patrick J. Kelley Kim A. Kelly Elizabeth and Peter Kraut Debbie O. and Anthony Labud Philip R. Lauderdale Betty J. and Alan E. Liberty Kathy B. Liu Deborah Locke David Lombana Donna M. Longcore Megan L. Lyle Ben A. Marchlewicz, Ph.D. Michael Maritch Constance C. Markey Adam Marr Patricia A. and Joseph E. Masterson Angela T. McBride Anna L. McKibbon Kenneth A. McNish Kristin Midthun Midvale School General Fund Karen and Rick Miller Jeffrey A. Miskoff, D.O. Corinne A. and Donald H. Mitchell Laine M. Moody Tonya P. and Lafmin C.
Morgan Ashley L. Morris Netty Q’s, L.L.C. Noble Sales Company, Inc. Nuance Communications, Inc. Paige and Landry Oden Kathy E. and Bruce T. Ogg Gwen Parker Colleen and Ernie Passariello Anuj Patel, M.D. Diana J. and James J. Patterson Julia and John R. Perkins Douglas Perry Jeromy L. Peters Mary K. and Todd M. Pierce Giovanna Plouffe Michael J. Polich Robert J. Powell Priority Chrysler Dodge Jeep Ram Sandra Ries Douglas Ervin Richard Rifenburg Karly M. and Christopher S. Rizzo Donald Warren Rose Sally and Eric S. Rosenfeld Royal Ice Cream Company Saint Mary’s Regional Medical Center Scherer Mountain Insurance, L.L.C. Timothy P. Schieffelin Gary J. Seitz Selex, L.L.C. Sherman-Kricker Insurance, L.L.C. Robert A. Shively Renie M. Shoberg Leo C. Sieren Anna and Laurence B.
Simon Jane B. Simoneau Daniel W. Smith John M. Smith, Jr. Southern Ohio Medical Center Jennifer M. and Marc S. Stein Joy S. and Dennis L. Stern Allison H. Sullivan William H. Sullivan, Jr. Cathy and Stanford G. Sutton Lori Tartell, R.N., M.S.N. The Lore Kann Foundation The Minneapolis Foundation – Breyer Family Fund The Rubber House, L.L.C. Patricia L. and Kenneth J. Thime Thistle Communications United Way of King County United Way of Rhode Island Verisk Analytics Karen and Roy Villanueva Chase W. Walsh Carol A. and Dennis S. Washburn Wells Fargo Private Bank Mary E. and Mark D. Wewers, M.D. Kathleen S. and Robert H. Whitby Kimberly and Miles D. White Alethe I. Wilkins Andrew A. Wilson, M.D. Marlene and Thomas B. Witt Matthew Woodruff Bradley T. Youngblood Denotes Deceased
In Honor Of The Alpha-1 Foundation received donations in honor of the following individuals between July 1, 2017 and June 30, 2018. Blake Aaronson George Adamietz Alpha-1 Foundation Staff Alpha-1 Support Group Leaders AlphaNet Coordinators Alphas for Building Friends for a Cure Jesus Alvarez Karen Anderson Erin L. Augustyniak Elizabeth Bailey Robert W. Bailey Kim Bair Roxanne Balderas Robert C. Barrett Grace and Megan Bauernfeind Wendy Becker Payton Thomas K. Bell Kenneth E. Benson Beverly Hills Church Council Susan K. Binnall Amanda June Bissell Mary C. Bissell Elena Bissell Marshall Kari Black Larry A. Bloomfield Elise Boyd Tone Skramstad Braekke Kimberly A. Brown Jennifer A. and Tony Browne Ruth and Gordon E. Cadwgan, Jr., Ph.D. Lorraine F. and Joseph A. Caporaso Caregivers of Alpha Patients Judith A. Carline Kiara Casmer Bonnie Chakravorty Jenny Chase-Leung McKinley Chittick Chip Christman Mary Christman
Jenn Clayburg Tommy Clayburg Joseph F. Collins Albert “Curts” Cooke Thomas C. Corron David A. Cunningham Melissa M. Daniels Alyssa L. Dausch Donald A. DaValle William Russell Davidson Christiane Deschamps Kenneth S. DeSieghardt Paul Dewyse Sheila Diamond Delores A. Dissinger Julia Douglas Robert Drees Dr. Neil J. Duval Rachel P. Dworaczyk Elizabeth A. Eich Danny Elia Debbie Elmer Karen L. Erickson Kristen Erpenbach Justin Everett Sarah E. “Sally” Everett, Esq. Trena Farmer Susan and Donald C. Ferro Doreen A. Flook Karen L. Fraser Charles W. “Tim” Frost Kathryn M. Gentemann Joanne and Joseph Gonzalez Gosney Family Anne D. Greenwood Mandy Guined Jon E. Hagstrom Valerie M. Hale Barbara Hay’s Family Bob W. Healy Hunter Henley Jeffery L. Hildebrandt Brent Hirn Angela M. and Eric D. Hoglund
Adelina and Sam Hoglund Becca and Shane Holehouse Raelene Homan-Dittmann Cathey F. Horsak Aiden Iverson Gail Jacobsen Jeffrey Jewell Danielle M. Johnson Elizabeth A. Johnson Grace and Lucas Johnson Carole and David O. Joyce James M. Keith Jeff Kendall Jerry Killens Jeffrey Koenig Lisa A. Kosak Robert W. Koval August and Victor Eskered Kroll Barbara Kushner Deborah O. Labud Lois L. Lange Kevin B. Lee Judy F. Lew, M.D. and Mark L. Brantly, M.D. Ellie and Katie Lindloff Lynn M. Lothian Martin P. Loughlin Richard Lovrich The Keith Lyon Family Cathy and Randy Lyon Ricky A. Maddox Jonathan Maidment Luci K. Majikas Market Fresh Management Charles Andrew Martin Jennifer Martin Patricia “Patsy” and Joseph E. Materson Angela T. McBride Timothy J. McDonough Victoria McGrane Barb McInnis Kieran McKenna James, Layla and Caroline
McPherson Jan and Rex McPherson Sara P. McVay Barbara Michaelson Bruce A. Miles Nancy Moga Rita Molhoek Mary Ann Moline Reese Morford A.J. Moseley Alyssa Mosley Michaela Navis Martha Nevergold Robert B. Nichols Terry R. Nickerson Bruce T. Ogg John O’Malley Susie A. Palmer Nichelle N. “Nikki” ParkerHayes Angela Patterson Diana J. Patterson Leone Patterson Robert T. Perreira James R. Quain Margaret L. and James A. “Jim” Quill The Quill Family Lynne E. and Albert W. “Ab” Rees Judi and John S. “Jack” Reid Joseph M. “Joe” Reidy Peggy Reynolds Sam Reynolds William “Bill” Ringgold Ethan Roehrich Robert “Bob” Rowe Velvet K. Rumfield Debora Sable Diane Sacchetti Amber Salzman Dorothea “Dot” and Robert A. “Sandy” Sandhaus, M.D., Ph.D. Joy C. Schaefer John Sebastian
Mark L. Seffinger Jacqueline Siemion Judy A. and Kenneth Simon Jett Skodras Jackson and Lexie Sonnhalter William T. Spilker Harrison Clay Stephens Diane Sims Stowers Charlie Strange, M.D. Gus C. Straub John William Stump Barrey V. Swing Lawrence Tandol Patty L. Tew Lisa A. Trepper Jonas Tretter Leonard Turner UNMC (Omaha) – Organ Transplantation Chase W. Walsh Diane L. Walsh Juba Walsh Kailey W. Walsh Linda J. Walsh Pamela and Fred C. Walsh Carol A. and Dennis S. Washburn Nancy D. Wheeler Richard “Rick” White John C. “Jay” Whitmore, Jr. Scott Alan Wilkins Carol Williams Cindy Williams John R. Williams Robert N. Williams Tim Williams Graham Willock Jim Wilson’s Family Dell Witcher Claudia and DC Young Savannah Youngson John J. Zacher Alexander Zelk Sarah Z. Zwicky Denotes Deceased
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In Memory Of The Alpha-1 Foundation received donations in memory of the following individuals between July 1, 2017 and June 30, 2018. Carol A. Aguado Marian Aguilar Diana Maria Gonsalves Aidnik Patricia A. Alexander Alpha Angels Evelyn Heath Anderson Lars A. Anderson Charlotte Andreasen William David Angst Elizabeth “Betty” (Small) Ascani Fred Ashmore Arlynn Baber Charles Baghdoian Bruce Bailey Roberta Bailey-Wambold Kenneth A. “Kenny” Bakaitis James D. Baker Thomas A. Baker Judith “Julie” Crowell Bakula Magnus Ball Anita Jean Bass Catherine Bauer Merle J. Baumhover Brenda L. Beach Jana T. Beavers Vernon “Vern” Behnke Karen A. Beisang Colin Bender David R. Bennett Sven T. Benz Irene Hook Bindner Bruce “Jack” Bissell Ann Clement Black William Lee Blakeley Karen E. Blunt Carol Beck Bohling James L. “Jim” Boling Steven Allen Booth Kenneth Bourgois Sherry Bowman Howard W. Box Cheryl Sue Boyce Bonnie S. Longcore Boyd Edward H. “Ed” Brailey Roger R. Bray Alice K. Brazil James “Jim” Brenna Melvin Wesley Bridges Donald R. Brinkman Douglas H. Brobst Karl T. Bruhn Marilyn Bruhn Eddie Bryant
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Richard A. “Dick” Bueker Evelyn C. Burns Cheryl Ann K. Burtsfield John Byrnes Pilar Cabiya Amelia Cabiya-Martinez Gordon E. Cadwgan, Sr. Robert S. Caine Robert C. Campbell Benjamin Clark Cash Nina Castaneda Stanley J. Castle Sharon Ceroll Dave Warren Chapman, Sr. Gary “Chris” Christensen Niels Christensen Charles Christy Daniel J. Clark Dorothy Louise Clark Tommy Clayburg Steven M. Cline Audrey Enright Collins James P. Cooke Robert James Cooke Dennis Cosgrave Joe Cosgrave Robert Covington Fred G. Crabb Dr. Robert C. Craig Timothy D. Craig Noah D. Crouch Robert C. Crowell Evangeline Curtis Joseph Danley Robert “Bob” Daughtridge Alonnia R. Davis Steve Dawson David K. Day Darleen DeArmond Frank Deford Peter John H. Delahey Lorraine Ryan DeNucci Francis “Franny” Desrosiers Emily Rosemary Deutscher Florence Dexter Patricia Dix Daniel L. Dixon Reginald Dorff Randy Ervin Dossat Robert J. “Bob” Doughty Mary Jo Douglas Thomas John Downie Cheryl DuBray Rodney A. DuBray Susan M. (Hedrick) Dugan
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Barbara V. Dungan Laureen Dunton Lorraine and LeRoy Ehlert Lee Elliott Carolyn Ann Emmanuel Mary Etter Donald Fairey Jonathan Fardink Ralph Farrar Nancy C. Feldvary Curtis Fendley Nancy Ferguson Ron Fields Brenda Joyce Fishback Dennis “Denny” Fisher Deborah Ann Fitzkee Philip M. Foster Glenn S. Fowler, Sr. Lucille Fowler David Frang Ron Fraser William Fraser Seymour Freedman, M.D. Philip “Phil” Freeman Roger Fruchey Sam Fulkerson Julie Ann (Beal) Gaither Cheryl Galttana Cathie L. Gancsos Ray Gastgeb Charles Leonard Geiger, M.D. Linda M. Gelineau Eric Scott Gilbertson Cindy Jo Gill Erland W. Gleason Emma Lou Glenn James “Jim” Charles Goering Delores Y. Goldsmith Minnie Goodlett James W. Gosney E. Sherman Grable, III Frank Granfors Roger S. Greene, Sr. Cynthia E. Grzegorowicz Richard “Dick” Guptill Larry J. Haan John W. Haggerty Robert J. “Bob” Haggerty Mozelle White Halton Sue Ellen Halvorsen James C. Hamilton Steve Alan Handley Eric Hansen
John D. Hanshaw Edward Gerald Haramia JoAnn R. Harkins Randall W. “Randy” Harrington Sondra “Ruth” Harrity Roy “Randy” Harwell Mark Albert Hathaway, II Robert W. Hatton Dorothy “Dottie” Hayes Nancy Hearte Gregory Heath Patricia G. Hegnauer John Heidema Daniel “Dan” Henderson Giselle Janet Henne Andrea “Andi” Henry Pamela Herman David Hernandez Julia Hernandez James P. “Jimmy” Herrin Robert H. Hessler Rebecca Hicks Terrance “Terry” Highland Shaylynne Sky Hill Susan Marlene Smith Hill Charles R. Hillegass John C. Hirschi James “Jim” Hixon Christina Anna Hoff Timothy “Tim” Harry Holdeman Rebecca “Becky” Holland Dianna B. Holt Rhonda Moore Hook Richard W. Horsak Joan M. Horstman Keny Hoskins Toni Kay Hoskins Cathy Joan Hossle Linda M. Houldin James E. Hubbs Gregory J. Hules John David Hustad Linda Joyce Hyland Bettina B. Irvine Donald A. Iwen Christine Jackson Penny Lynn Jenkins Kenneth L. Jespersen Judy Jewell Susan L. Mickler Johnson Donald Johnston Victoria T. “Vicki” Joseph Oliver James Joyce
Alan Kaplan Donald R. Kardos Karalee J. Karp Russell Kaylor Rita R. Keir Margaret “Peggy” Keith Nina Lucille Keith Mary E. Keller Catherine M. Kelley Jean Kelly Arno D. Kester Kenneth F. Kiernan Brenda Kilner David R. Kinnius Daniel J. Kirby Kirk D. Kirby Marvin R. Kirchner William S. Kirk Helen Kline Helen and Robert Kukura John E. Kushner Nancy J. Kutzler Jane Lambert William “Bill” Lebherz Robert Lee Charmaine L. Lehman Janet Kay Lehmann Gregory Clay Leigh Sharon Leuis Margaret M. Lewis Sandra Lewis Stuart A. Liberty Alexandra J. “Sandy” Lindsey, Co-Founder Lewis C. Lindsey, Jr. Lynda Clare Lindsey Nicholas B. Linnenberger Michael Locke Wanda Logsdon Lorna Lomack Ricky D. Lough Robert H. Lubalin Robert W. Lugg Mark M. MacEachern Robert C. Maffit Barry Marcum Edith Marcum Lynette Marcum Gayle Marriott Elza Ray Maslen Judi R. Matich Gracie Mattocks Terry L. Mauk Linda Jane Jackson Maxwell
In Memory Of continued Don McAmis Alyce Mae (Carlson) McArdle Philip McBride Maureen Hickey McCaffrey Brooke McCarter, Jr. Dorothy and Charles McCarthy William “Billy” McClellan Alberta McElyea Philip J. “Phil” McKenna Ames McKinsey Robert N. McLaughlin Thomas F. “Tom” McLaughlin Kevin A. McMackin Lawrence P. McNamara William McNamara James Bruce McNeill Ronald Meier Francis N. Meister Nancy Merchant Jennifer Meredith Tim Miller Kenneth Minnigerode Michele D. Mitchell Thomas L. Mitchell Dolline Mixter R. Bruce Moody, M.D. Celeste B. Morris Donald E. Moser Jerry W. Mullen William Mulqueen Allan L. Murnane Shirley Murphey Nancy Anne P. Murray Patricia A. Nagorka Keith Nash
Dean Nettleton Lila Nevergold Patricia E. Dunn Nevers Carol D. Noggle Robert E. Noonan Jeanne L. Norins Roxanna Nowak Carole O’Mara Anne C. Palen Bruce F. Parker Sally Parks Julianna Patterson William G. Payne David M. Perreault Patricia R. Perrozzi Eric J. Peterson Harold J. “Hal” Phelan Roger Pickle Richard Alan Pine Mark Edward Pittinger David M. Pogue, M.D. James W. “Jim” Polich Dennis W. Pollock Charles Poore Patricia L. Porter Sandy Peggy Porter John Potash Robert L. Potash Cynthia M. Potter David M. Powley Leonard Pugh Barbara J. Pusey The Quill Family Leeann Rabchenia Michael Ratner Ronald J. Reale Adah R. Reaume Marie Ann Reaume Cecil Ray Redmill
William F. Reese George F. Reifsneider, Jr. Jim W. Reuter Frank W. Ricker Marilyn “Lyn” Roberts Edward “Woods” Robinson Regina Rochman-Radcliffe John Rogalski, Jr. Debbie Bruhn Rogers Mary Kay Rohner Mary Beth Roof Jackson N. Root Judy K. Rose Mike Rosella Jodi G. Roth Edward Roxberry Morton E. “Mort” Ruderman Robert C. Ryan Sanford Jay Sacks John Owen Sams Robert Joseph Savard Phyllis J. Schalow Russell A. Schalow Burton D. Scheck William J. “Bill” Scheuerman Lawrence Schmidt Lynn Schowalter Richard Schriver Edward A. Schuck Allen Schwark Jim Schwarz Donald Seffinger Gerald “Jerry” Seifert Susan L. Seitz Patricia S. Shiramizu Wayne A. Simoneau Deborah R. Sisemore
Mike Skivington Arlene M. Slinski Christopher L. Smith Lorna Smith Norma Smith Peter G. Smith Richard S. Smith Vicky Smith Wilson F. Smith Gordon L. Snider, M.D. Davis Snyder Arne L. Solberg Donna Sommatino Jane Bond Sperling Kelly Jean Sprague Charles R. “Charlie” St. Denis Susan Gerrard Stanley, Co-Founder Mary Ann Stanton Doris M. Stark John D. Starling Sue Steinmetz Nannette Gail Stevenson LaVonne “Scottie” Stewart Margaret Anne W. Stewart Marta C. Strock Randall “Randy” Strock Kathy Mae Sullivan Victor J. Sullivan, Jr. Charles Sutton Kathryn “Kay” Kinsel Swift Richard L. Teunissen Peter M. Thomson Susan D. Thorstad Jane A. Totten James A. “Jim” Trimble Steven Trost Lon E. Tryggestad
Jill JoAnne Tschirhart Jacqueline C. Turner Jonelle Turner Sylvia and Mark Turnis Roslyn Upoff Cathy Urish Ivana Vandenberg Kenneth Ver Haagh Ken Vickers Barbara Visser Maffeo Renato Vitti Denis Vuelta Ed Von Kattengell Sean Walker Helen Chase and Jack “Coach” Walsh John W. Walsh, CoFounder James J. Waygood Howard Werdehoff Virginia L. “Ginny” White Ralph “Steve” Whitlock Dan Carl Wilkins Joan Willert Patricia G. Williams Ronald Wilton Andrew Frank Winning Brady L. Woessner Gary Wolf Joan Marlowe Wood Vickie Lynn Woodruff Mary Ann Workman Dolores M. Worswick Joyce D. Wortman Jerome Yarett, M.D. Oliver L. “Ollie” Young Terry L. Young Virginia Young
Our Mission The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. n
By 30th of June 2017, the Alpha-1 Foundation had invested $71 million in research and related programs at 112 institutions in North America, Europe, the Middle East and Australia.
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ALPHA-1 1 FOUNDATION The Alpha-1 Foundation 3300 Ponce de Leon Blvd. Coral Gables, FL 33134 (877) 228-7321 • www.alpha1.org