Gordon E. Cadwgan, PhD *plus
Chair - West Palm Beach, FL
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.
James Quill *plus
Vice Chair - Bluffton, SC
Jim Quill is the General Manager for AlphaNet and currently lives in Bluffton, South Carolina. He has an extensive history of Alpha-1 in his family. He was diagnosed with Alpha-1 in the late 1980’s and received a bilateral lung transplant in May 2006. He retired as an educator after 34 years in the public school system during which time he worked as an elementary classroom teacher, reading specialist and school principal. He graduated from Penn State University with a Bachelor’s degree in Elementary Education, has a Master’s degree in Education from Temple University, and a certificate in school administration from the College of New Jersey. He serves on the Foundation’s Educational Materials Working Group, the Budget, Program & Nominating Committee, and the Audit, Finance & Compensation Committee. He’s an active volunteer for the Gift of Life Program and attends regular Alpha 1 Support Groups, telecalls, and Education Days.
Elizabeth Johnson *plus
Secretary - Winchester, MA
Liz Johnson is currently Executive Director of Marketing and Communication at Northeastern University’s D’Amore-McKim School of Business where she develops and manages 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 not-for-profit organizations. Her industry experience includes publishing, software and services, research, and education. Most recently she was vice president of marketing for MeansBusiness, working with organizations such as City University of London and Duke Corporate Education. She has served as vice president of marketing at Copyright Clearance Center, at Dataware Technologies, and at 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 as an online instructor.
Jeanine M. D’Armiento, MD, PhDplus
Treasurer - New York, NY
Dr. D’Armiento is Associate Professor in the Department of Medicine at Columbia University. She received both her MD and PhD in biochemistry and molecular biology from UMDNJ-Robert Wood Johnson Medical School, and then completed both her internship and residency in internal medicine at the Columbia University Medical Center. She is board certified in both Pulmonary Medicine and Internal Medicine, and has a clinical specialty in Lymphangioleiomyomatosis (LAM). She is the Director for the Center for LAM and Rare Lung Diseases at Columbia University. Her research interests are broad, from COPD to LAM to asthma to smoke injury, and her work extends from the laboratory to investigating the pulmonary status of women exposed to biomass in India and Bangladesh. Her laboratory is supported by several grants from the National Institutes of Health and an Established Investigator Award from the American Heart Association.
Ab Rees *plus
Immediate Past Chair - Kansas City, MO
Ab Rees was diagnosed with Alpha-1 in 2001. After his diagnosis, he decided to get involved with the Alpha-1 community to help both myself and others like him.
“When I was invited to become a member of the Alpha-1 Foundation Board, I enthusiastically accepted and I gave it my all. My involvement and dedication has grown stronger due to my admiration of our accomplishments, but also because my eight-year-old grandson has been diagnosed as an Alpha, thanks to the early detection program of the Foundation. My grandson and I look forward to our continued progress toward finding the cure and serving the Alpha-1 community in the process,” he says.
Rees is a second generation railroad executive with 50 years of operating and senior management experience. He has a Bachelor of Business Administration from University of Central Arkansas and is a graduate of Harvard Business School Program of Management Development. He has been a member of 35 boards of directors and the chairman of many.
Martin R. Zamora, MDplus
Scientific Advisor - Aurora, CO
Dr. Zamora is Professor of Medicine, Division of Pulmonary Sciences and Critical Care Medicine, at the University of Colorado at Denver School of Medicine, Aurora, Colorado. He is 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 2013 and the Best Doctors in America Award for 2011-2012.
Virginia Clark, MDplus
Member - Gainesville, FL
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.
Sandra Ries Douglas +plus
Member - Pittsburgh, PA
Sandra (Sandi) Douglas became involved with the Alpha-1 Association in 1993 when her daughter Julia was diagnosed with Alpha-1 shortly after being born. She has participated over the years in Michigan Support Group meetings and as a resource for “new” Alpha parents. She has a special place in her heart for Alpha-1 Kids, and is proud her daughter now volunteers at National Education Conferences to create a fun and memorable experience for families. She is passionate about ensuring that families have the information and support they need in difficult times through education, awareness, and advocacy.
She is currently the Director of Specialized Master of Science Programs at the Joseph M. Katz Graduate School of Business, University of Pittsburgh. She retired from Hewlett Packard as a Senior Program Manager in 2012. She earned her Master in Business Administration degree from Michigan State University in 2004 and has worked in the supply chain, manufacturing, and information technology industries for 30 years. She serves on the Audit, Finance and Oversight committee and the Development committee for the Board of Directors.
Dell Witcher *plus
Member - Vestavia Hills, AL
During three decades as a medical communications professional, Dell Witcher has written and produced news stories, marketing materials and videos about countless medical conditions, from the common to the uncommon. In 2008 she encountered a disease she had never heard of before, when elevated liver enzymes led to her diagnosis with Alpha-1 Antitrypsin Deficiency. Soon after her diagnosis, Dell was elected to the Alpha-1 Association Board of Directors, where she has since been involved in numerous communications projects, including serving as writer/producer of the Alpha-1 Family Awareness Video Series, the Alpha-1 Association’s 20th Anniversary Video and the Advocacy Training Video. In 2011, she received the Claude Baril Communications Award. She began her career as a radio and television news reporter, then later served as Vice President of Communications for a chain of physical rehabilitation hospitals based in the Southeast. In 1991 she established Witcher Communications, a communications consulting business specializing in the medical and legal industries. She currently resides in Vestavia Hills, Alabama, with her husband, Brunson White, and their two sons.
Jennifer Jopp *plus
Member - East Bethel, MN
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 entire international Alpha-1 community.
Ann Knebel, PhD, RNplus
Member - Rockville, MD
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.
Prof. Noel G. McElvaney, MDplus
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.)plus
Member - Cleveland, OH
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.”
Fred Walsh *plus
Member - Duxbury, MA
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.
Frank Willersinn, MD *plus
Member - Brussels, Belgium
Frank Willersinn, M.D., 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