ANNUAL REPORT
2017
Gordon E. Cadwgan, PhD
James Quill
Dell Witcher
Jeanine M. D’Armiento, MD, PhD
Martin R. Zamora, MD
Ab Rees
Virginia Clark, MD
Thomas Corron
Sandra Ries Douglas
Elizabeth Johnson
Jennifer Jopp
Noel G. McElvaney, MD, BCh, BAO
Judith Simon
James K. Stoller, MD, MS (Org. Dev.)
Frank Willersinn, MD
Alpha-1 Foundation Board Members July 1, 2016 - June 30, 2017
Executive Committee Gordon E. Cadwgan, PhD*, Chair.................................... West Palm Beach, FL James Quill*, Vice Chair.............................................................. Bluffton, SC Dell Witcher*, Secretary........................................................Vestavia Hills, AL Jeanine M. D’Armiento, MD, PhD, Treasurer............................... New York, NY Martin R. Zamora, MD, Scientific Advisor........................................Aurora, CO Ab Rees*, Immediate Past Chair.............................................Kansas City, MO Board of Directors Virginia Clark, MD....................................................................Gainesville, FL Thomas Corron*..................................................................... Fort Wayne, IN Sandra Ries Douglas+.............................................................. Pittsburgh, PA Elizabeth Johnson*.................................................................Winchester, MA Jennifer Jopp*...................................................................... East Bethel, MN Noel G. McElvaney, MD, MCh, BAO...........................................Dublin, Ireland Judith Simon*.............................................................................. Denver, CO James K. Stoller, MD, MS (Org Dev)........................................... Cleveland, OH Frank Willersinn, MD*......................................................... Brussels, Belgium Executive Staff Henry R. Moehring, MBA*....................... President and Chief Executive Officer Robert C. Barrett............... Executive Vice President and Chief Financial Officer Marcia F. Ritchie.............. Executive Vice President and Chief Operating Officer Robert A. Sandhaus, MD, PhD.................................................Clinical Director Adam Wanner, MD..............................................................Scientific Director *Denotes diagnosed Alpha-1 Antitrypsin deficient +Denotes diagnosed family member
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Message from the Leadership Founders’ legacy continues to drive research, patient care, education and advocacy Our fiscal year 2017 — from July 1, 2016 through June 30, 2017 — was a year of achievements for the Alpha-1 community and the Alpha-1 Foundation. Among the highlights of the year, we can include: n
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Henry R. Moehring, MBA
Research into both lung and liver diseases related to Alpha-1 made clear progress including breakthroughs that were considered impossible just a decade ago. The Foundation announced its 2017 research awards to 12 investigators who received a record combined $2.1 million for their projects. This was the third straight year that the Foundation has increased its funding of research grants.
Gordon Cadwgan, PhD
The John W. Walsh Translational Research Award in Alpha-1 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 Foundation teamed up with the COPD Foundation, the American Thoracic Society, and CRD & Associates — our Washington lobbying firm — to challenge Medicare’s competitive bidding program that endangers the health of Alphas in need of supplemental oxygen. Alpha-1 physicians from around the country gathered for the Foundation’s Clinical Resource Center (CRC) Forum in October 2016 to learn about updates on our research program and explore ways to improve their partnerships with the Alpha-1 community and support groups. The 26th Annual Alpha-1 National Conference in Chicago, on June 23-25, 2017, was the largest conference ever with more than 650 attendees. Nearly 33% were first-time attendees. Thirty-two speakers presented on 24 topics ranging from clinical trial design to what it means to be an Alpha-1 carrier. Alphas are living longer, healthier, more fulfilling lives by taking advantage of disease management programs, participating in research, and making their voices heard as they advocate for continued access to care and treatment. Many give-back by participating in our Building Friends for a Cure Program to raise money for research.
We have come a long way, as an organization and as a community. Today newly-diagnosed Alphas have a wealth of information to learn about Alpha-1, multiple options for treatment and a robust network of support groups nationwide. John W. Walsh, Sandy Lindsey and Susan Stanley, the founders of the Foundation, had a mission to find a cure for Alpha-1 and improve the lives of Alphas, worldwide. We at the Foundation are proud to be a part of that mission.
Henry R. Moehring, MBA President & CEO
Gordon E. Cadwgan, PhD Board Chair
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Alpha-1 Foundation continues During FY 2017, the Alpha-1 Foundation (A1F) faced several challenges, which tested our strength and resilience and that of the Alpha-1 community. Ab Rees, past Chair, had been serving as Acting President and CEO of the A1F since John Walsh — who co-founded the Foundation in 1995 and was President and CEO ever since — had an accident and went into an extended leave of absence from the A1F. Rees presented then an executive transition plan to the Executive Committee of the Foundation Board that Walsh himself had brought in even before the accident, proposing himself as Founder and Chief Visionary Officer and naming Henry Moehring as new President and CEO. The plan was accepted unanimously. Unfortunately, after just over a year of absence from the A1F, John Walsh passed away in early March 2017. For decades, Walsh had tirelessly forged a patientcentered movement that not only changed the Alpha-1 landscape, but also the way patients are seen and respected in the health sector. Only four months after Walsh’s passing, in July 2017, longtime A1F Director of Communications and former AlphaNet coordinator, Bob Campbell, also passed away. The dozens of moving stories he wrote about Alphas, caregivers, physicians, researchers and staff are a testament to his dedication to the A1F and to the community it serves.
John W. Walsh, co-founder of the Alpha-1 Foundation
Bob Campbell, A1F communications director 2007-2017
In the July issue of the COPD Foundation Journal the new “Clinical Practice Guidelines for the Diagnosis and Management of Alpha-1 Antitrypsin Deficiency in the Adult” was published, it is based on the latest evidence and six years of work, recommending the best practices for Alpha-1 4 • ALPHA-1 FOUNDATION
testing, managing Alpha-1 lung and liver disease, and when augmentation therapy should be prescribed, among other recommendations. The guidelines were intended to update and simplify a 2003 document from the American Thoracic Society (ATS) and the European Respiratory Society on the diagnosis and management of Alpha-1. Also, the A1F teamed up with the COPD Foundation, the American Thoracic Society (ATS), and Cavarocchi, Ruscio, Dennis & Associates, our Washington lobbying firm, to challenge Medicare’s competitive bidding program that endangers the health of Alphas in need of medical oxygen. An oxygen working group wholly focused on ensuring appropriate patient-centered supplemental oxygen access resulted. A survey to evaluate Patient Perceptions of the Adequacy of Supplemental Oxygen Therapy was launched, and results from 1,926 individuals were announced in March of 2017, indicating clear trends on issues related to supplemental oxygen access and services. Alphas were encouraged to follow their representatives in Congress on social media, email them and attend events with them during district work periods, urging them to improve oxygen access and choice, making it clear to Congress that obtaining appropriate supplemental oxygen is becoming increasingly difficult. Research into both the lung and liver diseases related to Alpha-1 made clear progress, including breakthroughs that were considered impossible a decade ago. Two Alpha-1 research and clinical programs did some of the most advanced Alpha-1 research in the world, collaborating on their investigations, and getting involved with the Alpha-1 community as well. With help from The Alpha-1 Project (TAP) grants, investigators developed: n
an antibody to detect mutant alpha-1 proteins that was shared with researchers and industry working on therapies for Alpha-1 liver disease;
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the first mouse model of Alpha-1 lung disease, which is also being used to study new therapies (University of Massachusetts, the lab of Christian Mueller, PhD); and induced pluripotent stem cells (iPSCs) made from tissue donated by Alphas, to work on a cell-based
to move the mission forward treatment for Alpha-1 (Andrew Wilson, MD, at the Boston University School of Medicine and the Center for Regenerative Medicine, CReM). In October 2016, in recognition of John W. Walsh’s many contributions, Mark Brantly, MD, announced a $225,000 gift from himself and his wife Judy Lew, MD, intended to establish the John W. Walsh Translational Research Award in Alpha-1. Brantly is a professor of medicine, chief of molecular genetics and microbiology and A1F research professor at the University of Florida. AlphaNet also announced a matching gift to increase even more that research fund. The A1F announced its 2017 research awards to 12 investigators who received a record total of $2.1 million for their projects. This was the third straight year that A1F grants have broken the record for investment in new research grants. Annual in-cycle grants are a regular part of the overall research program.The Foundation has invested $65 million to support Alpha-1 research and programs at 106 institutions in North America, Europe, the Middle
East and Australia. The Foundation’s Donor Recognition Dinner, which takes place every two years to honor those whose generosity makes A1F’s research possible, was held in conjunction with A1F’s Investigators’ Meeting, which brought together the scientists who received research grants in 2014 and 2015. Donors and researchers mingled and talked at dinner and the reception that preceded it, and donors got to hear firsthand about the research they helped to fund. During the Investigators’ Meeting, Karina Serban, MD, from National Jewish Health, gave a progress report on her research as the winner of the first Gordon L. Snider Scholar Award. Serban studied the effect of the alpha-1 protein on inflammation in the lungs. Among her conclusions was the possibility that augmentation therapy may be indicated for all conditions that lead to “exuberant” lung inflammation. This award is named after Gordon L. Snider, MD, a longtime A1F board member who passed in 2013 at age 91. Snider, a pioneer in COPD and Alpha-1 research, emphasized the importance of encouraging young investigators to pursue a career in Alpha-1 research. At the dinner, the Foundation expressed gratitude to its dedicated supporters. Donors of $5,000 and above were acknowledged for their generosity. The Foundation Circle, for donors of at least $25 million, recognized AlphaNet for a milestone $50 million in contributions. The Chairman’s Circle, for donors of at least $10 million, recognized Grifols. The Platinum Founder’s Circle, for donors of at least $5 million,
Mark Brantly, MD
Alpha-1 Foundation Donor Recognition Dinner ALPHA-1 FOUNDATION •
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Alpha-1 Foundation continues to move the mission forward
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recognized CSL Behring and the State of Florida. The Gold Founder’s Circle, for donors of at least $2.5 million, recognized Shire. Dohmen Life Science Services was recognized as a new member of the Founder’s Circle, for donors of at least $1 million. The Founder’s Circle included Ruth and Gordon Cadwgan, Marilina and Leopoldo Fernandez, and the Health Foundation of South Florida. At the Investigators Meeting, Michael Iannotti, PhD, gave an update on his fellowship at the National Institutes of Health’s (NIH) National Center for Advancing Translational Sciences (NCATS). TAP funded Iannotti’s research, which uses a powerful tool called high-throughput screening to test for molecules that could be developed into treatments for Alpha-1. Antonello Punturieri, MD, PhD, program director of the Division of Lung Diseases at the National Heart, Lung, and Blood Institute (NHLBI) at the NIH, said at the meeting that NIH funding for Alpha-1 research has been increasing in recent years. He cited an $11.5 million NHLBI grant earlier to Alpha-1 research at the University of Massachusetts. Alpha-1 physicians from around the country gathered for the Alpha-1 Foundation’s Clinical Resource Center (CRC) Forum in October 2016 and heard presentations on issues including A1F research program and establishing partnerships with the Alpha-1 community and support groups. James Donohue, MD, of the University of North Carolina at Chapel Hill, who chairs the Clinical Resource Network Working Group, introduced the speakers. Adam Wanner, MD, A1F’s scientific director; Charlie Strange, MD, director of the A1F Research Registry;
Gordon Cadwgan presents a proclamation from the State of Florida Senate honoring the legacy of John W. Walsh.
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Alpha-1 Global brought together international patient and researcher perspectives.
Robert Sandhaus, MD, PhD, clinical director of the A1F and medical director of AlphaNet; Jeanine D’Armiento, MD, PhD, of New York-Presbyterian Hospital/Columbia University Medical Center, and A1F Board member; Jeffrey Teckman, MD, of St. Louis University; Timothy Craig, DO, of Penn State University; and Karen Fraser, the A1F’s community and development relations coordinator, were present at the meeting. Alpha-1 support groups are also forming strong partnerships with Alpha-1 CRCs, which provide all the resources Alphas need to improve their quality of life. A few months after holding a meeting on PatientFocused Drug Development with over 200 Alphas present and more than 600 participating online, the U.S. Food and Drug Administration (FDA) showed it was indeed listening. The FDA Center for Drug Evaluation and Research (CDER) held a meeting for Alpha-1 patients, caregivers, leaders and investigators to discuss Alpha-1 liver disease and potential clinical trial design and therapeutic options. Then, A1F leaders met with the FDA Center for Biologics Evaluation and Research (CBER) where the use of a placebo in Alpha-1 augmentation therapy trials was discussed. Furthermore, the Medical and Scientific Advisory Committee (MASAC) of the A1F stated that it is no longer ethically or scientifically appropriate to conduct clinical trials of drug efficacy using placebo as a treatment arm in severe AATD for any human plasma-derived drug which meets the standard for pharmacokinetic and safety non-inferiority. Traditionally, the FDA has spent much time before a new drug review in listening to doctors and
scientists, and reviewing mountains of data. Under the Patient Focused Drug Development initiative, the FDA is also listening now to patients and their supporters to consider their needs and concerns before making decisions. The FDA posted a “Voice of the Patient” report on its website, summarizing the testimony the FDA received from the Alpha-1 community. Alphas are living longer, healthier and more fulfilling lives by taking advantage of disease management programs, participating in research, and making their voices heard as they advocate for continued access to care and treatment, according to a study conducted by AlphaNet. Today’s Alphas, who are members of AlphaNet, are living far beyond the depressing estimate of a 54.5-year lifespan for Alphas as found in an often-quoted study from the 1990s.
Highlights of Alpha-1 National Conference
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Alpha-1 Foundation continues to move the mission forward
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Jean-Marc Quach, Henry Moehring, Fellow Michael Iannotti and Karen Erickson representing the Alpha-1 research community at a National Center for Advancing Translational Science event in Washington, D.C.
The 6th Alpha-1 Global Patient Congress and the 3rd Research Conference on Alpha-1 was held April 5-8, 2017, in Lisbon, Portugal. The Research Conference theme was novel treatment paradigms for Alpha-1 and some other conditions that have become targets for alpha-1 augmentation therapy, including diabetes, organ rejection and autoimmune disorders.
The research conference, on April 5-6, was for invited researchers and speakers but it was open to anyone interested. The Global Patient Congress on April 7-8, included representatives from 36 countries and provided a platform for education, discussion and building a collaboration to increase awareness, detection, and access to care for Alphas worldwide. The conference culminated with a 2017-2019 action plan for the global Alpha-1 community. Over 650 people from 46 states attended the 26th Annual Alpha-1 National Conference in Chicago, on June 23-25, 2017, making it the largest conference ever, with nearly 33% of first-time attendees. Every year, attendees are asked their primary reason for attending the conference. Their overwhelming response, as in years past was education. The 2017 conference accomplished that goal with 32 speakers presenting on 24 topics, ranging from clinical trial design to what it means to be and Alpha-1 carrier.
Alyce Yout celebrates her Irish heritage while fundraising for Alpha-1 research and programs at the second largest gathering of Alphas, the Celtic Connection dinner and silent auction.
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The conference culminated in a tribute dinner in honor of John W. Walsh. The program included videos presenting Walsh in “his own words” and the range of his influence, not only in the Alpha–1 and COPD communities, but also in the rare disease and lung disease patient communities. Speakers described the vast impact he made throughout his life and all he contributed to the Alpha–1 community and to the patient community at large.
There were six Education Days during FY 2017, in San Francisco, Austin, Atlanta, Denver, Pittsburgh, and Charleston, registering a total assistance of 745 people. A critical component of the A1F’s strategic plan continued to raise awareness of Alpha-1 while providing tools to the community to raise funds to support research and related programs. Building Friends for a Cure (BFC) was designed to broaden the reach of the A1F and promote stronger links between the organization and the community. BFC provides the platform in which members of the Alpha community can help A1F work towards the goal of finding a cure. These events promote community interaction between Alphas, their friends and family, investigators, industry and medical professionals, including Clinical Resource Center physicians and staff. These include events like Escape to the Cape, Celtic Connection and Virtual Walk, among others.
Participants of the 2016 Alpha-1 Virtual Walk raised awareness in 32 states. Regional teams were recognized at the 26th National Education Conference in Chicago, IL. ALPHA-1 FOUNDATION •
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Financial Statements Statement of Financial Position YEAR ENDED JUNE 30,
2017
2016
Assets Current Assets Cash and cash equivalents 732,804 1,134,854 Investment securities 15,234,111 14,131,370 Accounts receivable 2,482,322 1,389,884 Due from TAP 2,523 7,010 Other current assets 19,687 34,637 Total current assets $18,471,447 $16,697,755
Investment securities — non-current Investment in TAP Property and equipment, net Other assets
Total assets
3,009,329 3,437,005 4,238,200 4,238,200 121,771 157,118 25,135 25,135
$ 25,865,882
$ 24,555,213
Liabilities and Net Assets Current Liabilities Accounts payable and accrued expenses 1,583,735 1,489,525 Due to TAP 2,302 – Due to COPD Foundation – 2,579 Deferred revenue 158.000 159,500 Total current liabilities $1,744,037 $1,651,604 Net Assets Unrestricted 21,290,756 20,851,759 Temporarily restricted 2,831,089 2,051,850 Total net assets 24,121,845 22,903,609 Total liabilities and net assets
Gross Revenues By Classification
FOR THE FISCAL YEAR ENDED JUNE 30, 2017 Unrestricted Contributions $3,712,454 34%
AlphaNet $3,090,000 28%
$ 25,865,882
$ 24,555,213
Functional Expenses
FOR THE FISCAL YEAR ENDED JUNE 30, 2017 Alpha-1 Research Network $3,752,642 38%
Alpha-1 Advocacy $341,989 3%
Fund raising $956,633 10% Administration and general $881,959 9% Restricted Contributions $2,996,416 27%
Other Income $1,273,475 11%
TOTAL: $11,072,345
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Other Alpha-1 Services $861,917 9%
Alpha-1 Education Days $345,526 4%
Alpha-1 Global $620,719 Florida 6% Detection Program 353,413 4%
Alpha-1 Registry and ACT Trial Alpha-1 $787,930 8% National Conference Alpha-1 Patient $615,260 Support 6% $336,121 3%
TOTAL: $9,601,950
Financial Statements Statement of Activities and Changes in Net Assets YEAR ENDED JUNE 30,
2017
2016
6,473,006 1,028 328,420 433,285 840,190
7,188,940 – 298,921 (157,055) 826,438
2,217,177
2,877,640
$10,293,106
$11,034,884
3,752,642 353,413 615,260 787,930 341,989 345,526 336,121 620,719 861,917
3,858,825 340,313 835,104 752,062 673,174 259,208 302,472 – 830,663
$8,015,517
$7,879,802
881,959 956,633 1,838,592
881,310 840,838 1,722,148
Total unrestricted expenses
9,854,109
9,601,950
Increase in unrestricted net assets
$438,997
$1,432,934
2,996,416 (2,217,177)
1,575,000 (2,877,640)
$779,239
($1,302,640)
1,218,236 22,903,609
130,294 22,773,315
$24,121,845
$22,903,609
Changes in Unrestricted Net Assets Unrestricted Support and Revenue Contributions, bequests and grant revenues Donated shares Fundraising revenues Investment income Other income Net assets released from restriction — satisfaction of program restrictions Total unrestricted support and revenue 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 Total program services Supporting services Administration and general Fundraising Total supporting 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 had invested $65 million in research and related programs at 106 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, visit alphaoneregistry.org, email alphaone@musc.edu or call toll-free 1-877-886-2383. Alpha-1 Coded Testing provides free, confidential testing administered through a research study that evaluates perceived risks and benefits of genetic testing. Visit alphaoneregistry.org, 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 (1-800785-3177), based at the Medical University of South Carolina, 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 condition. 12
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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 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-ToOne 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 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 dfernandez@alpha1.org or 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. 275.
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. Contact information is available at a1f.org/alpha1doc. 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 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 ggutierrez@alpha-1global.org or call 1-877-228-7321 ext. 212. 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 Barbee Bennington at 1-855-351-6610 or bbennington@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 2017 l Our 2017 Peer Reviewed Principal Investigators are: Russell Bowler, MD, PhD National Jewish Health Proteomic signatures of COPD severity and progression in alpha-1 antitrypsin deficient patients n
Ashley Buckle, PhD Monash University, Australia Engineering a-1 antitrypsin for augmentation therapy n
Lisa Cabrita, PhD University College London, United Kingdom Co-translational folding and misfolding studies of alpha-1-antitrypsin n
N. Tony Eissa, MD Baylor College of Medicine Lysosomal Origin for Emphysema n
Patrick Geraghty, PhD The Research Foundation of SUNY Alpha-1 antitrypsin regulates S100A9mediated inflammation n
Monica Goldklang, MD Columbia University Medical Center In vivo imaging of lung apoptosis in alpha-1 antitrypsin deficiency n
Alpha-1 Foundation Postdoctoral Research Fellowship Grant 2018 Killian Hurley, MD, PhD Royal College of Surgeons in Ireland, Ireland Modelling AATD Lung Disease Using Alveolar Epithelial Cells Derived from Gene-Edited iPSC n
Alpha-1 Foundation Pilot & Feasibility Grant 2018 Maria Elena Miranda Banos, PhD Sapienza University of Rome, Italy Dissecting immunomodulatory mechanisms of A1AT with functionneutralising monoclonal Ab n
Alpha-1 Foundation Gordon L. Snider Scholar Awards 2018 Monica Goldklang, MD Columbia University Medical Center A Role for MMP-13 in COPD Exacerbations in the Alpha-1 Community n
Pasquale Piccolo, PhD
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Telethon Institute of Genetics and Medicine, Italy Regulation of autophagy in liver disease due to Z a1-antitrypsin
C. Daniel Mullins, PhD
Alpha-1 Foundation/ATS Research Grant 2018 Alice Turner, PhD
Maurizio Molinari, PhD Fondazione per l’Istituto di Ricerca in Biomedicina Bellinzona, Italy The role of novel ER-resident autophagy receptors in clearance of polymeric ATZ University of Maryland, Baltimore Medical Costs of Alpha-1 Antitrypsin Deficiency-Associated COPD in the U.S. n
Keith Robertson, PhD Mayo Clinic The Epigenome as a Modulator of Alpha1 Antitrypsin Deficiency Liver Disease n
Brian Varisco, MD Cincinnati Children’s Hospital Medical Center Cela1 is Required for Bullous Progression in AAT-Related Lung Disease n
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University of Birmingham, United Kingdom Improving access to augmentation therapy in AATD: the effect of augmentation on quality of life n
Alpha-1 Foundation/CHEST Foundation Research Award in Alpha-1 Antitrypsin Deficiency 2018 Diana Crossley, MBChB Queen Elizabeth Hospital Birmingham, United Kingdom Functional Magnetic Resonance Lung Imaging using Inhaled Hyperpolarised 129Xenon: A pilot study of the clinical utility in Alpha-1 Anti-Trypsin Deficiency (AATD) n
Alpha-1 Foundation/AASLD Foundation Clinical and Translational Research Fellowship Award 2018 Danielle Detelich, MD Massachusetts General Hospital, Division of Transplantation Alpha-1 Antitrypsin for Prevention of Hepatic Ischemia-Reperfusion Injury During Normothermic Machine Perfusion n
Alpha-1 Foundation Travel Grants 2018 Russell Braeuer, PhD University of Michigan 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” n
Boris Baranovski, PhD Ben-Gurion University of the Negev, Israel Travel Grant to 2017 Joint Congress of the IPITA-IXA-CTS 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” n
Marion Bouchecareilh, PhD INSERM U1053 BaRITon, France Travel Grant to 16th Gordon L. Snider Critical Issues Workshop: MZ Carrier State in Alpha-1 Antitrypsin Deficiency n
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, 2016 and June 30, 2017. $2.5 Million or More AlphaNet, Inc. $1 Million - $2,499,999 CSL Behring, L.L.C. Grifols Shire $250,000 - $499,999 State of Florida $100,000 - $249,999 Dohmen Life Science Services Judy F. Lew, M.D. and Mark L. Brantly, M.D. $25,000 - $99,999 Accredo Health/Express Scripts Anonymous Donor Coram, Inc. Diplomat Specialty Infusion Group Kamada, Ltd. $10,000-$24,999 Anonymous Donor Wendy Becker Payton Berkeley Research Group (BRG) Midge and Greg Bertles Ruth and Gordon E. Cadwgan, Jr., Ph.D. Estate of Matthew L. Contessa Drive for Alpha-1 Awareness – Kelly C. and Kyle Aaronson Noel G. McElvaney, Mb Medical Research Charities Mary Louise and Henry R. Moehring, M.B.A. Ruderman Family Charitable Foundation Judy A. and Kenneth Simon Elisabeth and Alan P. Sklar
$5,000-$9,999 Adverum Biotechnologies, Inc. Arrowhead Pharmaceuticals Kenneth E. Benson Bio Products Laboratory Cynthia M. and Hugh D. Cooley COPD Foundation, Inc. Karen and Ron Fraser Peg and Peter Iverson Jewish Communal Fund Sarah A. Emerson and Edward N. Krapels William D. Lawson Lorna and Adrian Nemcek Priority Excavating, L.L.C. Proteostasis Therapeutics David Pusey Jean-Marc Quach Holly and Donovan Quill Tui and Joseph M. “Joe” Reidy William Richter Lyle D. Schutte Estate of Constance R. Smith Marion and Andrew Steele Steward Health Care System, L.L.C. The Benevity Community Impact Fund The Ergonomic Group $1,000-$4,999 Claudia M. and Wheldon A. Abt Alnylam Pharmaceuticals Alpha-1 Resource Group American Association for Respiratory Care American Respiratory Care Foundation Anonymous Donors Liane W. Atlas Julianne B. and Alan F. Barker, M.D. Charlotte S. and Robert C. Barrett Baxalta Community Giving Programs Julie L. Berry
Kathy A. Bock CSL Behring – Kankakee employees Carol and Frank Deford Audrey M. and William Demas Lois Desimone Dicerna Pharmaceuticals Sally D. and John H. Dorf Enterprise Holdings Foundation Erickson Solutions Group, Inc. Sarah E. “Sally” Everett, Esq. Nona S. Feltner Susan and Donald C. Ferro Barbara E. and Michael J. Flintrop, M.D. Joan and Oliver Garry David H. Glocker Igor Gonda, Ph.D. Grace Jones Richardson Trust – Catharine and Charles MacDonald Mary and Robert L. Greene, Jr. Pat F. and Charles B. Griffis Jean M. and Michael B. Griffith Miekeleen D. Hart Barbara and Bob Healy Michelle Hefley Heritage Biologics, Inc. Marion T. and Larry L. Hoffman Bridgette Holbrook Carol M. Hutchinson Ingram Foundation, Inc. – Debra L. Shores Kenneth A. Irvine Sarah M. and Richard P. Johnson J.S. Sherman & Associates, Inc. Deborah H. and Richard C. Keiser Nina and Jack Keith Paul C. Kimball
Drs. Camille N. and Darrell N. Kotton Dennis G. Krock Jeffrey C. Kruzel Marie E. Lamont Christine Lathrop Betty J. and Alan E. Liberty Lighthouse Computer Services, Inc. Linden Advisors LP Austin Locke Jill and Michael B. Lowe Mary C. and James W. Lyle Gillian L. Marcott Joyce M. and William J. Martin, II, M.D. Karilynne M. Martin Patricia “Patsy” and Joseph E. Masterson Elizabeth M. McKenna Susan H. McKinney Midvale School General Fund Richard K. Mill Karen and Rick Miller Laine M. Moody National Organization for Rare Disorders Navin, Haffty and Associates – John E. Haffty Neighbor To Nation New Boston Strategies Group LTD Noble Sales Company, Inc. Michael O’Mara Optime Care, Inc. Cindy and Robert S. Pailet Cherie Patel Sanj K. Patel Patient Services, Inc. Paul R. Perrault PG&E Corporation Foundation Marie Elizabeth Planer Plasma Protein Therapeutics Association
Laura L. Plocinski Barbara Poresky Janet L. and Harry Pottinger Margaret L. and James A. “Jim” Quill Diana and Franck Rahagi, M.D. Raising Hope for Others Betty D. Randel Mr. and Mrs. Kevin R. Ray Lynne E. and Albert W. “Ab” Rees Gwendolyn M. Reichbach RoundTower NorthEast Dorothea and Robert A. “Sandy” Sandhaus, M.D., Ph.D. Sheryl Schey John H. Schoolfield Anna and Laurence B. Simon William O. Snead, III, J.D. Shannon and Adam J. Sonnhalter Richard S. Speiden SPIN Therapeutics William E. Stark Kimberly L. and Tod A. Stimpson Terry and James K. Stoller, M.D., M.S.(Org. Dev.) Pamela and Charlie Strange, M.D. Charlie M. and Gus C. Straub Pamela and Sidney Suggs Elizabeth B. Taylor Sydney T. Taylor Patricia and William Tew The B.T. Rocca, Jr. Fund – Marilee Rocca Johnson The Columbus Foundation Joan F. Tobin Trillium Technical Janie and James A. Trimble Truist
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Honor Gallery continued United Way of Greater Philadelphia and Southern New Jersey United Way of Rhode Island University of Massachusetts Medical School Pamela E. and Kenneth VanScoy Sharon J. and Dolph W. Von Arx Karen L. and David P. Voss Doris and Adam Wanner, M.D. Catherine P. and Randall J. Weisenburger Dell Witcher and Brunson White Kathleen A. Williamson Michael Wolff Renee and Casey Wolff Dolores M. “Dee” Worswick Julie W. Wright Your Cause, L.L.C. Martin Zamora, M.D. $500-$999 Ryan Aamot Albert Adams Rudolf A. Aguilar AmazonSmile Foundation Arcadia Healthcare Solutions Elisa M. and David T. Askin Automation and Measurement Specialist, L.L.C. Dawn R. and Robert W. Bailey Paul F. Balser, Sr. Bank of America Charitable Foundation Jessica and Frankie L. Bartolini Janet M. and Gene A. Baumhover Beasley Mezzanine Holdings, L.L.C. George Beasley Janice M. and John M. Bell Roseann R. Bindner Susan K. and Thomas H. Binnall Scott Blackburn Veronica A. and Lamonte Blanford Sarah Boney
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Louise W. Bray Tatiana and David A. Brenner, M.D. Sharon R. Brock Beverly “Bev” and Richard “Dick” Bueker Markey P. and Thomas F. Burke Robert E. Burke, C.P.A. Butler Buckley & Deets, Inc. Canton Firefighters Association Susan and Scott D. Casmer Lori A. and Wayne Caswell Cavarocchi Ruscio Dennis Associates, L.L.C. Victoria T. and Robert D. Chelberg Rosemary B. Chiodo Virginia J. “Ginger” Clark, M.D. Alexander Clarke Thomas P. Clephane Club Ex Fitness & Nutrition Carol and Bill Collopy Don Connot Dorothy L. Corron James C. Cotton, Jr. Bryanna A. and Andrew R. Craig Susan L. and Timothy D. Craig Kathleen Craig-Mylius CRH Foundation Robert C. Crowell D & M Ink, Inc. D A K Property Management, L.L.C. Jen and Matt Daniels Day Communications, Inc. – Amanda Day Dell EMC Robert J. Fallat, M.D. James L. Fermoile Amy Figueroa Lauren and Hunter B. Fountain Donna J. Fox Fry Communications, Inc. – Henry Fry Kathie L. Gamlin Kathryn M. and Stephen Gentemann James P. Ginocchio Monica P. Goldklang, M.D. Deborah L. Gonzales Greater Twin Cities United Way Janet E. Guptill Hillegonda “Gonny” Gutierrez
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Rachel L. and Jon E. Hagstrom Barbara Haas Aaron J. Hebbeln Brent Hirn Mary S.G. Hoffman Angela M. and Eric D. Hoglund Bonnie and David E. Hoglund Carolyn M. Hopp Steve Hovey James M. Hurley William Irvine Jennifer L. Iwen J Calnan & Associates Patricia L. and William A. Jackson Patricia A. and Donald E. Janke Brandy O. and David H. Jesperson Mark C. Jones Jennifer M. and Randy P. Jopp JPMorgan Chase & Co. Carl M. Karoub, M.D., P.C. Patricia M. Keegan Kim A. Kelly Patricia A. and Scott Kelly Anne M. and William A. Kennedy Knuckleheads Tavern, Inc. Helen L. and Jack L. Koenig Jeanne and Brian Kushner Philip R. Lauderdale Donna J. and Junior E. Lawler Jack M. Leader Kevin M. Lello Leyden Electric, Inc. Kathy B. Liu Deborah Locke Matt Loftin London Bay Construction, Inc. – Stephen G. Wilson Megan L. Lyle Marian Macias Michael Maritch Adam Marr Robin and Joseph W. McClanathan Angela McCoy Kenneth A. McNish Patricia A. and Robert H. Meurer Kristin Midthun Susan and David S. Mochi
Vicki and Fred Modell Thomas L. Moran Tonya P. and Lafmin C. Morgan Brian T. Moynihan Joellyn and Darrell J. Nall Joanne K. and Terry R. Nickerson Michael C. Nivens Nuance Communications, Inc. Stephen O’Brien Barbara Jo and Donald S. Orth Diana J. and James J. Patterson Pete Olson Landscaping Paul Petersen, Jr. Sharon W. and Barnet Phillips Robert J. Pitts, Jr. Shelley J. Pollock Portsmouth Radiological PA – John G. Pierce, M.D. John R. Prater Preferred Income Partners Jeff A. Prentice Priority Chrysler Dodge Jeep Ram John R. Raben, Jr. Katharine L. Randel Joy P. Rasin Lynne and Gregory J. Raymond Susan C. and Michael V. Reagen Bridget A. Reynolds Marcia F. Ritchie Riverside Medical Group – Zeyad Baker, M.D. Karly M. and Christopher S. Rizzo Rolling Prairie Lions Club Richard O. Roth John M. Scaletta Edward P. Secunda, D.O. Gary J. Seitz Lynne W. Shotwell Jane B. Simoneau Joyce L. and Ronald Smith Judy and Gary F. Sobocinski Theresa and John Sorenson Southern Ohio Medical Center Donald L. Starkweather
Margaret and Robert P. Stoker Mary A. and Dave Stryker Darren S. Sun Kay K. and James Swift Lori Tartell, R.N., M.S.N. The Cozen O’Connor Foundation, Inc. The DuPage Community Foundation The Edward and Barbara Netter Foundation, Inc. The Lore Kann Foundation The Marketing Research Bureau, Inc. – Patrick L. Robert The Minneapolis Foundation – Breyer Family Fund Patricia L. and Kenneth J. Thime Tim Peters and Company, Inc. Lori Towers Gerard M. Turino, M.D. United Way of Chester County United Way of Greater Milwaukee & Waukesha County United Way of King County United Way of the Greater Lehigh Valley, Inc. Karen and Roy Villanueva Ekaterini Vulgaris Chase W. Walsh Warren Shafer Growing Solutions, Inc. Michele Whalen Alethe I. Wilkins Carol and John R. Williams Andrew A. Wilson, M.D. Cindy and Wayne E. “Chip” Withers, Jr. Marlene and Thomas B. Witt Melanie Yetter Andrew Yin, M.D. Linda K. and Robert Yoder John C. Young Bradley T. Youngblood Theresa J. and Ottis H. Youngblood Wendy M. and William C. Zabel Vincent “Todd” Zinni Denotes Deceased
In Honor Of The Alpha-1 Foundation received donations in honor of the following individuals between July 1, 2016 and June 30, 2017. Blake Aaronson Alpha-1 Foundation Staff Alpha-1 Support Group Leaders AlphaNet Coordinators Alphas for Building Friends for a Cure Karen Anderson Juliana Aquino Liam D. Armbruster Erin L. Augustyniak Robert W. Bailey Grace and Megan Bauernfeind Wendy Becker Payton Karen A. Beisang Jonathan Bennington Kenneth E. Benson Betty Bernard Larry A. Bloomfield Sherry A. Boling Jocelyn K. Bonk Andrea and Mark Brashear Christine M. Brininstool Jill and David J. Brown Ruth and Gordon E. Cadwgan, Jr., Ph.D. Kim and Kerri Cannata Lorraine F. and Joseph A. Caporaso Caregivers of Alpha Patients Kiara Casmer Jennifer A. Childress and Tony Browne Ella Choronzy Lorraine Cimino William J. Clark Joshua Clouette Richard W. Cohorn Karl F. Cook Albert “Curts” Cooke Thomas C. Corron Susan and Timothy D. Craig Harold R. Cram, IV Shawn Cray Patti Curry
John Daly Alyssa L. Dausch William Russell Davidson Amanda “Mandy” Davis Donald E. Davis, Jr. Lucy Deaton Zachary Devlin Paul Dewyse Sheila Diamond Lysa Dilley Delores A. Dissinger Thomas Scott Dobberteen Michael J. Dobbs Michelle Dolisca Steve Donovan Parker Douglas Dr. Neil J. Duval Donna Edwards Debbie Elmer Karen L. Erickson Rob Erickson Sarah E. “Sally” Everett, Esq. Susan and Donald C. Ferro Nancy B. Feuerbach Jodi L. Fillmore Natalie Fisher Doreen A. Flook Beatrice H. “Bea” Fortson Karen L. Fraser Joan M. Frisbee Catriona Garry Judith L. Golding Joanne and Joseph Gonzalez Kyle R. Gorden Anne D. Greenwood Maggie and Gracie Gregory Daniel Haggerty Jon E. Hagstrom Jackson and Blake Harader Linda L. Hazelbeck Bob W. Healy Raymond D. Henke Hunter Henley Micah Hessler Jim and Scotti Hinze Becca and Shane Holehouse
Daphne P. Hustad Michael A. Iggulden Jeffrey Jewell Danielle M. Johnson Grace and Lucas Johnson James H. Johnston Carole and David O. Joyce Barbara M. Julian Sharon Kanitsch James M. Keith Joan F. Kellett Jerry Killens Dana Kinney Ella Kirsch Teresa Kitchen Gloria Knotts Jeffrey Koenig Lisa A. Kosak Deborah O. Labud Pat Lawler Kevin B. Lee Judy F. Lew, M.D. and Mark L. Brantly, M.D. Pauline Lim Steven E. Lindahl Ellie and Katie Lindloff Emily and Matt Link Jerome C. “Jerry” Lippert The Long Family Richard Lovrich Brooke and Owen C. Lyon Cathy and Robert Lyon Patricia E. “Pat” MacInnes Jonathan Maidment Patricia “Patsy” and Joseph E. Masterson Barbara Mattioni Angela T. McBride Jean M. McCathern David R. McCool Helen and Gerald McDonough Therese R. McGee The McKenna Family Sara P. McVay Lois and Ronald Meier Bruce A. Miles Ida Ruth Moore Reese Morford
Philip Moyer Michael Murin Donald O. Myers Paige Nafziger Patricia A. Nagorka Martha Nevergold Robert B. Nichols Terry R. Nickerson Bruce T. Ogg Ralph Olsen Kari Otto Nichelle N. “Nikki” Parker-Hayes Angela Patterson Leone Patterson Barb and David M. Perreault Robert D. Phillips James M. Polk Jean-Marc Quach Margaret L. and James A. “Jim” Quill The Quill Family Carol and Donald Rabush Alex Raymond Lynne E. and Albert W. “Ab” Rees Judi and John S. “Jack” Reid Joseph M. “Joe” Reidy Sam Reynolds Tiffany and Brian L. Ridyard William “Bill” Ringgold Sarah J. Rosauer Dois Rosser Robert “Bob” Rowe Velvet K. Rumfield Diane Sacchetti Keith Sellers Judy A. and Kenneth Simon Owen Sprigle Suzanne M. Stall Harrison Clay Stephens Dayle V. Stevens Dr. Keith Stevens Connie Storey Gus C. Straub
Robert Supker Barrey V. Swing Lawrence Tandol Jana Tanner Eddie Test Patty L. Tew Kenneth J. Thime Ann Tiemann Chayse Torstenson Jennifer C. Trahan Jonas Tretter Buzz Trevathan Dakota and Abbey Truett Nora B. Tulchin Leslie and Joe Turner Patricia A. “Patti” Virtue Pamela and Fred C. Walsh Diane L. and John W. Walsh, Co-Founder Juba Walsh Linda J. Walsh Matthew Ward Virginia “Ginger” E. Watkins Kathy Weaver Barbara and Michael Weintraub Nancy D. Wheeler Richard “Rick” White John C. “Jay” Whitmore, Jr. Robert “Bobby” Wicker Jon S. Willert Graham Willock Dell Witcher Casey Wolff The Wolff Family Claudia and DC Young Tom Young Bradley T. Youngblood Alyce M. Yout Denotes Deceased
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In Memory Of The Alpha-1 Foundation received donations in memory of the following individuals between July 1, 2016 and June 30, 2017. Kathleen “Kate” (O’Connell) Adams Marian Aguilar Patricia A. Alexander Larry G. Allen Patrick J. Anderson Susan (Insell) Andrews Regina L. Angeli Alpha Angels Elizabeth “Betty” (Small) Ascani Fred Ashmore Arlynn Baber Charles Baghdoian Roberta Bailey-Wambold Kenneth A. “Kenny” Bakaitis Judith “Julie” Crowell Bakula Magnus Ball David Barker Dr. Jamie G. Barnhill Carmen Leone Bartelt A.J. “Joe” Basiliere Merle J. Baumhover George B. Beaton Colin Bender David R. Bennett Patricia F. Bennion Raymond D. Bergeson J.T. Bickett Karen E. Blunt Stephen P. Bock James L. “Jim” Boling Kenneth Bourgois Howard W. Box Bonnie S. Boyd Edward H. “Ed” Brailey Glen E. Braxton Roger R. Bray Alice K. Brazil Charles R. “Bud” Bregel James “Jim” Brenna Donald R. Brinkman Robert K. Brock Gerald E. “Jerry” Brown Karl T. Bruhn Marilyn Bruhn Eddie Bryant Charles Bryan Brett Burgess Christine Busch John Byrnes Pilar Cabiya Amelia Cabiya-Martinez Gordon E. Cadwgan, Sr. Robert S. Caine
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Nina Castaneda Stanley J. Castle Sharon Ceroll Gary “Chris” Christensen Niels Christensen Charles Christy Daniel J. Clark Tommy Clayburg Jay T. Cline Joanne R. (Massaro) Contessa Matthew L. Contessa James P. Cooke Robert James Cooke Gerald G. Cork Dennis Cosgrave Joe Cosgrave Robert Covington Fred G. Crabb Dr. Robert C. Craig Ian Thomas Cran Noah D. Crouch Evangeline Curtis Joseph Danley Martin C. Danner Robert “Bob” Daughtridge Alonnia R. Davis Steve Dawson David K. Day Frank Deford Pauline (Bokum) Devlin Florence Dexter Florence A. Dickerson Patricia Dix Thomas S. “Dobb” Dobberteen William L. “Dub” Dobberteen Colleen Dobbs Ernest R. Dobbs Wallace J. “Wally” Dodson Reginald Dorff Robert J. “Bob” Doughty Thomas John Downie Susan M. (Hedrick) Dugan Laureen Dunton Elizabeth M. Egbert Lorraine and LeRoy Ehlert Lynette Marie (Reed) Eisenbraun Fern M. Erickson Mary Etter Donald Fairey Ralph Farrar Sheila B. Farren Curtis Fendley
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Carol Feore Nancy Ferguson Ron Fields Dennis “Denny” Fisher Deborah Ann Fitzkee Sarah Eaton Follett Philip M. Foster Vernon D. Fowler William Blake Fox David Frang Ron Fraser William Fraser Seymour Freedman, M.D. Philip “Phil” Freeman Roger Fruchey Sam Fulkerson Cheryl Galttana Richard Keith Gamlin Cathie L. Gancsos Marguerite P. Gardner Jessie C. Garner Richard Garrett Sue K. Garrison Ray Gastgeb Linda M. Gelineau Cindy Jo Gill James “Jim” Charles Goering Delores Y. Goldsmith Minnie Goodlett Annie Goodwin Etienne Goyeneche Sherman Grable Frank Granfors Larry R. Gray Sherry C. Gray Marjorie A. and Paul Green Ted J. Green Roger S. Greene, Sr. Edwin Griffin Cynthia E. Grzegorowicz Charles B. “Charlie” Gudaitis Richard “Dick” Guptill Sharon M. Gutzweiler Drema D. Gwinn Larry J. Haan Michael L. Haas John W. Haggerty Robert J. “Bob” Haggerty Mozelle White Haltom James C. Hamilton Eric Hansen John D. Hanshaw JoAnn R. Harkins Sondra “Ruth” Harrity Roy “Randy” Harwell
Robert W. Hatton Dorothy “Dottie” Hayes Thomas C. Hazen Nancy Hearte Gregory Heath John Heidema Gary D. Heitzman Daniel “Dan” Henderson Andrea “Andi” Henry Pamela Herman Julia Hernandez James P. “Jimmy” Herrin Robert H. Hessler Rebecca Hicks Terrance “Terry” Highland Charles R. Hillegass John C. Hirschi James “Jim” Hixon Ruth A. Hogan Timothy “Tim” Harry Holdeman Rebecca “Becky” Holland Dianna B. Holt Katie (Diane) Hopp Richard W. Horsak Keny Hoskins Toni Kay Hoskins James E. Hubbs Astrid T. Hudson Greg J. Hules Harold W. Hull John David Hustad Linda Joyce Hyland Bettina B. Irvine Donald A. Iwen Cynthia R. Jensen Kenneth L. Jespersen Joyce Catherine “Nana” Johnson Donald Johnston Bob Jones Victoria T. “Vicki” Joseph Oliver James Joyce Diane G. Kanicsar Alan Kaplan Donald R. Kardos Karalee J. Karp Carolyn A. Kay Russell Kaylor Rita R. Keir Margaret “Peggy” Keith Mary E. Keller Joe Kelley, Jr. Bobby G. Kelly Jean Kelly
Arno D. Kester Kenneth F. Kiernan Brenda Kilner Jon E. Kindley Daniel J. Kirby JoAnne B. Kirby Marvin R. Kirchner William S. Kirk Jack L. Koenig Jo Ann (Machen) Korb Helen and Robert Kukura Katherine B. Kunkle John E. Kushner Nancy J. Kutzler Jane Lambert Thomas S. Larsen Robert Lee David L. Leverson Margaret M. Lewis Sandra Lewis Stuart A. Liberty Thelma Lieberman Ralph Lindsay Alexandra J. “Sandy” Lindsey, Co-Founder Lewis C. Lindsey, Jr. Lynda Clare Lindsey Nicholas B. Linnenberger Michael Locke Wanda Logsdon Lorna Lomack Margaret A. “Peggy” Lorimer Ricky D. Lough Elaine E. (Dege) MacDonald Robert C. Maffit David S. Maihack Kimberly Ann C. Mantooth Edward W. Marble, Jr. Lynette Marcum Gayle Marriott Charles J. “Charlie” Martin Elza Ray Maslen Judi R. Matich Leola M. Matter Gracie Mattocks Terry L. Mauk Raymond J. Maybury, Sr. Don McAmis Alyce Mae (Carlson) McArdle Robert D. McAuliffe Brooke McCarter William “Billy” McClellan
In Memory Of continued Jill A. McCormick Philip J. “Phil” McKenna James McKeown Ames McKinsey Robert N. McLaughlin Thomas F. “Tom” McLaughlin Kevin A. McMackin Frances M. McMullen Stanley C. “Charlie” McMullen William McNamara James Bruce McNeill Nina S. (Wendel) Meek Francis N. Meister Nancy Merchant Jennifer Meredith Tina Mikolowski Deloris “Fay” Miller Tim Miller Kenneth Minnigerode George Mitchell Dolline Mixter Roger Moline R. Bruce Moody, M.D. Celeste B. Morris Edward “Skip” Morris Donald E. Moser Jerry W. Mullen William Mulqueen Barbara A. Mulstay Shirley Murphey Thomas J. Myers Keith Nash Johnnie Nesloney Dean Nettleton Kyle Neumann Patricia E. Dunn Nevers Elaine M. and Rich Noble Carol D. Noggle Roxanna Nowak Erle C. Oman
Carole O’Mara Helen C. Otis Anne C. Palen Clayton R. Palmer Sally Parks Julianna Patterson William G. Payne Patricia A. “Patsy” Petersen Eric J. Peterson Harold J. “Hal” Phelan Theodore S. “Ted” Piascyk Muriel I. Picard Ronald “Ron” Eugene Piearcy Richard Alan Pine David M. Pogue, M.D. Dennis W. Pollock Charles Poore Sandy Peggy Porter John Potash Robert L. Potash Cynthia M. Potter Theresa Potter David M. Powley Leonard Pugh Patricia H. “Tia” Pullen Barbara J. Pusey The Quill Family Robert A. “Bob” Rackers Randolph E. “Randy” Rager Richard L. Randel Michael Ratner Adah R. Reaume Marie Reaume Thomas P. Reavey Cecil Ray Redmill William F. Reese Kurt D. Reichelt Edward M. “Eddie” Renfro, II Jim W. Reuter Ginny Ricketts
Lourdes Ridyard Marilyn “Lyn” Roberts Donald D. Robinson Edward “Woods” Robinson Mardel R. (Corwin) Rock Debbie Bruhn Rogers Mary Beth Roof Jackson N. Root Judy K. Rose Mike Rosella Jodi G. Roth Edward Roxberry Morton E. Ruderman Robert C. Ryan John Owen Sams Christopher Sardzinski Esther C. (Leseman) Savard Robert Joseph Savard Phyllis J. Schalow Russell A. Schalow Irene R. Schellhase William J. “Bill” Scheuerman Lawrence Schmidt Walter Schopp Richard Schriver Edward A. Schuck Vida J. Schutte Allen Schwark Jim Schwarz Ryan M. Schwarz Donald Seffinger Gerald “Jerry” Seifert Susan L. Seitz Leila M. Settle Margaret Sheffield Carol F. Short Ken Sievers Wayne A. Simoneau Karen Kelley Simonini
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 Donna Sommatino Jane Bond Sperling Jennifer Stadt Richard Gordon Stanley Susan Gerrard Stanley, Co-Founder Mary Ann Stanton Margaret M. “Peg” Stapleton Doris M. Stark Joan C. Starkweather Sue Steinmetz Lisa Stevens LaVonne “Scottie” Stewart Nancy L. Stiffler Marta C. Strock Randall “Randy” Strock Barbara A. Stuart Douglas J. Sundlie Richard L. Teunissen Peter M. Thomson Martha A. Tiemann Suzanne F. Tierney Jane A. Totten Steven Trost Jill JoAnne Tschirhart Jonathan C. Tucker Jonelle Turner Roslyn Upoff Cathy Urish
Ivana Vandenberg Ken Vickers Charles E. Vieth, Jr. Barbara Visser Ed Von Kattengell Kent A. Von Lanken Helen Chase and Jack “Coach” Walsh John W. Walsh, Co-Founder Joan O. Warren Richard J. Wassenaar Bobby Grant Watson Nancy Watson Kelly J. Weppler Howard Werdehoff Michael Wierenga Dan Carl Wilkins Joan Willert Dawn R. Williams Patricia G. Williams Michael P. Williams, Sr. Neil Williams Kristal M. Willis Harriet Wilson Timothy F. Winchester William “Bill” Windham Ann E. Witkowski Brady L. Woessner Gerald C. Wolcott Joan Marlowe Wood Dolores M. “Dee” Worswick Ronald J. Worswick Joyce D. Wortman Ruby Wright Jackie L. Wriston Mark Wylie Terry L. Young Wayne S. Young William E. “Bill” Young Ottis H. Youngblood, Jr. Paul A. Youngs
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 65 million in research and related programs at 106 institutions in North America, 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