- Jeanine M. D’Armiento, MD, PhD
- Elizabeth Johnson *
- Jennifer Jopp *
- Fred Walsh *
- Gordon E. Cadwgan, PhD *
- Martin R. Zamora, MD
- Virginia Clark, MD
- Kenneth Irvine +
- Peg Iverson *
- Ann Knebel, PhD, RN
- Noel G. McElvaney, MD, MCh, BAO, FRCPI, FRCPC
- James K. Stoller, MD, MS (Org. Dev.)
- Frank Willersinn, MD *
Chair – New York
Jeanine M. D’Armiento, MD, PhD, is a Professor of Medicine in Anesthesiology at Columbia University in New York City. She is the Director of the Center for Molecular Pulmonary Disease in Anesthesiology and Physiology and Cellular Biophysics, and Director of the Center for Lymphangioleiomyomatosis (LAM) and Rare Lung Disease. Her clinical center serves as a tertiary referral center for the Northeast region and cares for patients with LAM and Alpha-1.
Dr. D’Armiento’s research focuses on understanding the mechanisms of lung injury and repair. The foremost goal of her research program is to develop insight into lung physiology and pathology through understanding the fundamental mechanisms modulating lung injury and repair and translating these findings into practical clinical solutions. Another focus of her work has been understanding the role of matrix metalloproteinases (MMPs) in normal physiology and in human disease, with an emphasis on the processes leading to tissue destruction in the lung and vasculature. Her laboratory integrates both in vitro and in vivo approaches and is uniquely situated to characterize the molecular changes in the study of lung injury and disease to identify potential therapeutic targets.
She was the first to describe the role for collagenolytic enzymes in the pathogenesis of emphysema and has identified the essential signaling pathways leading to the induction of these proteases in lung disease. Her current work in this area is to examine a series of therapeutic approaches blocking expression of these proteases in lung models. Most recently, her group identified a novel compound capable of attenuating lung destruction in animal models of the disease, which she is now developing for use in the clinic.
Currently she is the principal investigator (PI) of a National Institutes of Health (NIH) funded R01 exploring the mechanisms of smoke induced lung injury. Additionally, she is a Co-PI of an NIH funded study exploring non-invasive imaging modalities in lung disease. Through both studies she is utilizing the knowledge gained from her basic research studies over the past years to develop novel therapeutic agents in the treatment of lung disease. The imaging studies have allowed the development of a new agent targeted to the inflamed lung, which she is actively testing to determine its use as a non-invasive imaging modality in patients with lung disease.
Dr. D’Armiento has been involved with the mentoring and training of young faculty. She has trained over 15 clinical and basic fellows most of which now hold academic and industry positions. In 2008, she completed a two-year appointment as the Associate Dean for Gender Equity and Faculty Development at Columbia University where she concentrated on professional development programs specific for women faculty. She currently serves on the Executive committee of the Columbia University senate and Chairs the Commission on the Status of Women at the University.
She has served on the Executive Board of the Alpha-1 Foundation and was recently named as Chair of the board of directors of the Foundation. She is also presently serving as a Consultant to the Director of the Office of Rare Disease, NCATs, National Institute of Health.
Vice Chair, Chair of Budget, Program & Nominating Committee – Massachusetts
Liz Johnson was most recently Executive Director of Marketing and Communication at Northeastern University’s D’Amore-McKim School of Business where she developed and managed the school’s marketing and brand strategy, marketing communications, social media and public relations. She came to Northeastern in 2002 with over 15 years of experience in executive management positions in for-profit and non-profit organizations. Her industry experience includes publishing, software and services, research, and education. She served as vice president of marketing for MeansBusiness, working with organizations such as City University of London and Duke Corporate Education. Copyright Clearance Center, Dataware Technologies, and Installed Technology International (a division of International Data Group). She earned an M.Ed. from Northeastern University in 2007, a BS in Management from Lesley University, and is certified by Northeastern University as an online instructor.
Secretary – Minnesota
Jennifer (Jen) Jopp was diagnosed with Alpha-1 in 2005 as a lung-affected ZZ. She has close to 20 years of Healthcare Administration Management experience and currently works for Allina Health at Abbott Northwestern Hospital in Minneapolis, MN in the Minneapolis Heart Institute cardiovascular department. She serves as a Support Group Leader for the Twin Cities Alpha-1 Support Group. She has participated in grassroots advocacy efforts on behalf of the Alpha-1 community in state and national arenas, and at both the legislative and regulatory levels.
In addition to her experience in organizing fundraising events, she has promoted advocacy and educational issues through networking efforts and writing letters to various publications. Her focus remains to help find a cure through research and to promote support, education and advocacy for the international Alpha-1 community.
Treasurer – Massachusetts
Fred Walsh graduated with a BS in History from the University of New Hampshire and received a Master’s degree in Counseling at Suffolk University in Boston. Like his father, he started teaching and coaching at a local high school. After seven years, Fred joined a mid-sized construction company. Diagnosed in 1989 along with his twin brother John, Fred’s health forced him out of construction. In 1995, he began working for AlphaNet as Patient Services Coordinator and received his 20-year pin in 2017. Fred has been a leader and a member of a hard working Alpha-1 Support Group in Massachusetts. He helped build fundraising efforts through events like the Team Alpha-1 Escape to the Cape and The Celtic Connection. Fred received a double lung transplant in 2016 and with his new lungs, Fred looks forward to riding his bike once again. As a life time resident of Massachusetts, Fred resides in Duxbury with Pam, his better half for 36 years. Their two daughters work and live together in Brooklyn, with Fred’s grand dog Seamus.
Immediate Past Chair – Florida
Dr. Cadwgan was diagnosed with Alpha-1 at age 48 in 1992. He and his wife, Ruth, seeking information and support for his condition, attended the first Alpha-1 Association annual meeting in Minneapolis and have missed only three since then. He received his Bachelor of Science degree in Chemistry from the University of North Carolina, Chapel Hill, in 1967 and holds a Ph.D. in Analytical Chemistry (1975) from the University of Massachusetts in Amherst, MA. He worked for Union Carbide in West Virginia and DuPont in Wilmington, DE and is now retired on disability. He is a trustee of the Board of Directors of his family’s charitable foundation. Since moving to Florida in 2000, he and his wife have been increasingly active in the Alpha-1 Foundation and Alpha-1 Association, leading a support group in West Palm Beach and running an annual walk in Jupiter, FL to raise money to find “the cure.” He is also a member of the Development Committee, the Investment Committee and Board of Directors of The Alpha-1 Project (TAP).
Physician-Director – Colorado
Dr. Zamora is Professor Emeritus of Medicine, Division of Pulmonary Sciences and Critical Care Medicine, at the University of Colorado at Denver School of Medicine, Aurora, Colorado. He was also the Medical Director of Lung Transplantation at the University of Colorado at Denver Health Sciences Center. He received his medical degree from the University of Colorado School of Medicine, and did his internship and residency in Internal Medicine and Pulmonary and Critical Care Fellowship at the University of Colorado Health Sciences Center, Denver. Dr. Zamora has been a member of the American Society of Transplantation Thoracic Committee, a member of the United Network for Organ Sharing Board of Directors, the UNOS Thoracic Committee and Chaired the Lung Allocation Subcommittee and was involved in the development and implementation of the Lung Allocation System. He also served as the Chair of the Foundation’s Transplant Issues Working Group and has been involved for many years with the Foundation’s Education Days, both locally and nationally. He has been an NIH funded researcher, has been the principal investigator of multiple industry sponsored studies, and has been awarded many honors, including most recently the America’s Top Doctors Award in 2017 and the Best Doctors in America Award for 2017.
Member – Florida
Virginia Clark, MD serves as the Associate Program Director of the Transplant Hepatology Fellowship and as an Assistant Professor of Medicine at the University of Florida’s Division of Gastroenterology, Hepatology, and Nutrition. She has been the recipient of the Fellowship Award in Advanced Hepatology from the American Association for the Study of Liver Diseases. Her research interests are focused on Alpha-1 Antitrypsin Deficiency and Fatty Liver Disease.
Member – Connecticut
Ken Irvine’s life pursuit continues to be using his Wall Street expertise to help find a cure for Alpha–1, which his late wife, Bettina, was diagnosed with some 20 years ago. She received the best of care, a double lung transplant and enjoyed many years of additional life. In the Alpha–1 community she was an icon, known as the “Iron Lady”. She was Chair of the Alpha–1 Association and an Association director for many years. Her legacy was creating national awareness of Alpha–1, and supporting early genetic testing and investment in cutting edge technology from stem cells to genomics. Mr. Irvine will always have skin in the game with three sons and three beautiful granddaughters. During Mr. Irvine’s prior years of leadership as Vice Chair and a board member of the Alpha–1 Foundation (2005–15), the Foundation pursued a $71-million 20-year basic research program. Also, during this 20-year period, the life expectancy of Alphas enrolled in AlphaNet’s management program increased by 50% because of better treatments. Now the focus is quality of life and finding a cure.
Irvine is a founding board member of The Alpha–1 Project (TAP), a value-added co-investor with biotech to accelerate finding a cure for Alpha–1. This venture philanthropy initiative enables the Foundation to harvest the investment it has made in basic research by partnering with biotech companies to drive forward early stage drug development by de-risking the process. Some 10 partnerships have been established and almost all are or shortly will be in clinical trials. He has been immersed in genomics for the last two decades attending numerous workshops, seminars, conferences. In 2018, he also attended courses at Harvard in “genomics and drug discovery” and in ”precision medicine”. It is a very exciting time as the Alpha–1 community is at the tipping point in genomic medicine. Irvine’s contribution to this innovative approach draws upon his career of pioneering new finance techniques such as derivatives, international Yen placements, securitizations and story bond private placements. His Wall Street career included Bank of Nova Scotia, Chase and other investment banks. He has an MBA from Harvard Business School and an BA from University of Michigan. He is a Chartered Financial Analyst, providing extensive experience in portfolio management as a member of the Foundation’s Investment Committee. As a member of the Foundation’s Development Committee, he hosts the annual Bettina Irvine Invitational Classic at the Greenwich Country Club, which has raised more than $500,000 over the past several years to help fund Alpha–1 research. His legacy will be working to discover cures for Alpha–1 which will benefit his sons, his grandchildren and potentially millions of others as these discoveries may have broad applications.
Member – Iowa
Peg Iverson was diagnosed with Alpha-1 in 1974 at the same time as her mother received her Alpha-1 diagnosis. She participated in the first National Institutes of Health Alpha-1 Study in 1985. She retired early, after a career in information technology as an administrator where she supported servers, routers, switches, software applications and websites. She began working as an AlphaNet Coordinator in 2011 and serves currently as an AlphaNet Program Manager.
She is a past Iowa Support Group Leader, attends the regular Iowa support group meetings and chairs an Alpha-1 Foundation fundraiser called “Iowa Alpha-1 Get the Scoop/Walk” to help fund the cure. She serves on the Foundation’s Educational Materials Working Group, participates in Alpha-1 advocacy efforts and volunteers to speak about Alpha-1 locally.
Member – Maryland
Ann R. Knebel, PhD, RN, FAAN, received her Baccalaureate Degree in Nursing in 1981 and a Master’s of Nursing Science in 1985 from the University of Evansville, Indiana. She earned her PhD in Nursing Science at the University of California, San Francisco. She is a Fellow of the American Academy of Nursing and has served on the Respiratory Nursing Society Board of Directors, American Association of Critical Care Nurses National Study Group on Weaning from Mechanical Ventilation, and Medical and Scientific Advisory Committee of the Alpha-1 Foundation. She served as the deputy director for the Office of Preparedness Planning, Office of the Assistant Secretary for Preparedness and Response (ASPR) and as an NINR program director in the Office of Extramural Programs and as a program analyst in the NINR Office of Science Policy and Public Liaison. Knebel has received numerous awards and special honors and in 2008 she was one of the first recipients of the Hubert H. Humphrey Award for Service to America. The American Thoracic Society has twice awarded her the Marilyn Hansen Meritorious Nursing Research Award.
Member – Dublin, Ireland
Prof. McElvaney, MD, BCh, BAO, FRCPI, FRCPC, is Chairman of the Department of Medicine and Professor of Medicine in the Royal College of Surgeons in Dublin, Ireland. Prof. McElvaney received his medical education at University College Dublin and completed his postgraduate internal medicine training at the Mater Misericordiae Hospital, St. Laurence Hospital and Jervis street Hospital in Dublin before pursuing a pulmonary Fellowship in Vancouver, Canada. Following that Prof. McElvaney worked in the Pulmonary Branch , NHLBI, NIH, Bethesda and in Cornell University-Rockefeller University Hospital , New York. He returned to Ireland in 1996. Prof. McElvaney’s unit has a well-established track record in research in Alpha-1 antitrypsin deficiency and Cystic Fibrosis and their work on lung defenses has led to interactions with pharmaceutical companies interested in translational research. For example, in 1999 Beaumont Hospital was the first site worldwide for intravenous administration of transgenic alpha-1 antitrypsin to individuals with Alpha-1 Antitrypsin Deficiency. In 2003 Prof. McElvaney founded the Alpha One Foundation of Ireland and subsequently received funding from the Irish Department of Health and Children to set up an Alpha-1 research unit to further research into the condition. He also established the first targeted detection program and registry for individuals with Alpha-1 in Europe.
James K. Stoller, MD, MS (Org. Dev.)
Member – Ohio
Dr. Stoller is a pulmonary/critical care physician and Chairman of the Education Institute at the Cleveland Clinic in Ohio. He is a member of the Respiratory Institute at the Cleveland Clinic, where he served previously as the Vice Chairman of Medicine, Head of the Section of Respiratory Therapy, and Executive Director of Physician Leadership Development. He is the Jean Wall Bennett Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and the Samson Global Leadership Academy Endowed Chair with a secondary appointment as Professor of Organizational Behavior in the Weatherhead School of Management at Case Western Reserve University. He received his medical degree from Yale University School of Medicine and completed an internship and residency at Peter Bent Brigham Hospital in Boston. He completed a fellowship in Pulmonary Medicine at Brigham and Women’s Hospital and in Pulmonary Medicine and Clinical Epidemiology at Yale University School of Medicine, then a fellowship in Critical Care Medicine at Massachusetts General Hospital in Boston. He later completed a Master’s Degree in Organizational Development and Analysis at the Weatherhead School of Management at Case Western Reserve University. He is Board Certified in Internal Medicine, Pulmonary Medicine, and Critical Care Medicine. He is an Associate Editor for the journal Respiratory Care and on the editorial boards of Clinical Pulmonary Medicine and of Thorax. He is a Trustee of the American Respiratory Care Foundation. He has received numerous awards, including the Egan Lecturer award, Forrest Bird M.D. Lifetime Scientific Achievement Award, and Grover Lecture at Ohio University. He has been continuously included in the “Best Doctors in America” and in “America’s Top Doctors.”
Member – Brussels, Belgium
Frank Willersinn, MD, President of Alpha-1 Plus Belgium, was born in Heidelberg, Germany, and lives in Brussels, Belgium, since 1972. He obtained his M.D. degree from the Université Libre de Bruxelles, Brussels, in 1979. After his military service as a doctor, he developed a strong interest for indoor pollution issues and the impact of building materials on health (concept of Building Biology; healthy and ecologically responsible building and living environment). He subsequently founded and currently manages a company focused on distribution of natural paints and wood care oils and furniture. Frank was diagnosed as Alpha in 1999 and has been treated with augmentation therapy since 2008. He co-created the first Belgian patient group in 2012, participated in the Barcelona Congress in 2013, and most recently founded the Belgian patient-driven organization Alpha-1 Plus asbl. He is also member of the German patient group Alpha-1 Deutschland e.v. Since 2014, Frank serves as Alpha-1 Global Steering Committee chairman and since 2015 as Alpha-1 Global representative on PLUS, the Platform of Plasma Protein Users in Europe.
* Diagnosed Alpha-1 Antitrypsin deficient
+ Diagnosed family member