Appendix
Meeting Participants:
Erin Pardee Washington, DC
Email: [email protected] Jen Bauernfeind
Alpha-1 Association Board of Directors Milwaukee, WI
Email: [email protected] Anne Marie Benzinger
Alpha-1 Advocacy Alliance Wolftown, VA
Email: [email protected] Jorge Bezerra, M.D.
Cincinnati Children’s Hospital Medical Center Cincinnati, OH
Email: [email protected] Natasha Bonhomme
Genetic Alliance Washington, D.C.
Email: [email protected] Coleen Boyle, Ph.D.
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention Atlanta, GA
Email: [email protected] Mark Brantly, M.D.
University of Florida College of Medicine Gainesville, FL
Email:[email protected] Bonnie Chakravorty, Ph.D.
Tennessee State University Nashville, TN
Email: [email protected]
Diane Cox, Ph.D.
University of Alberta Edmonton, Canada
Email: [email protected] Marlene Erven
Alpha-1 Association Miami, FL
Email: [email protected] Sally Everett, Esq.
Longmeadow, MA
Email: [email protected] W. Gregory Feero, M.D., Ph.D.
National Human Genome Research Institute Bethesda, MD
Email: [email protected] Symma Finn, M.A.
University of Florida Gainesville, FL
Email: [email protected] Charles Gayer
Talecris Biotherapeutics Research Triangle Park, NC Email: [email protected] Ken Goodman, Ph.D.
University of Miami Miami, FL
Email: [email protected] Stephen Groft, Pharm.D.
Office of Rare Diseases Bethesda, MD
Email: [email protected] Alan Guttmacher, M.D.
National Human Genome Research Institute Bethesda, MD
Email: [email protected]
M.K. Holohan, J.D.
National Human Genome Research Institute Bethesda, MD
Email: [email protected] R. Rodney Howell, M.D.
University of Miami, Miller School of Medicine
National Institutes of Health Bethesda, MD
Email: [email protected] Beth Labasky
Beth Labasky & Associates Tallahassee, FL
Email: [email protected] Jamie Lamson
Alpha-1 Foundation Miami, FL
Email: [email protected] Michelle Lloyd-Puryear, M.D., Ph.D.
Maternal and Child Health Bureau
Health Resources and Services Administration Rockville, MD
Email: [email protected] Marie Mann, M.D., M.P.H.
Maternal and Child Health Bureau
Health Resources and Services Administration Rockville, MD
Email: [email protected] David Mannino, M.D.
University of Kentucky Lexington, KY
Email: [email protected]
Dawn McGee, M.S., C.G.C.
Medical University of South Carolina Charleston, SC
Email: [email protected] Amy McGrath
Talecris Biotherapeutics Research Triangle Park, NC Email: [email protected] Jon Merz, M.B.A., J.D., Ph.D.
University of Pennsylvania Philadelphia, PA
Email: [email protected] Ray Moseley, Ph.D.
University of Florida College of Medicine Gainesville, FL
Email: [email protected] Miriam O’Day
Alpha-1 Foundation Edgewater, MD
Email: [email protected] Richard Parad, M.D., M.P.H.
Brigham and Women’s Hospital Cambridge, MA
Email: [email protected] Eeva Piitulainen, M.D., Ph.D.
Malmö University Hospital Malmö, Sweeden
Email: [email protected] Randel Plant
Alpha-1 Foundation Miami, FL
Email: [email protected] Donovan Quill
Centric Health Resources Allentown, PA
Email: [email protected] Don Rabush
Alpha-1 Kids Cathedral City, CA
Email: [email protected]
Marcia Ritchie Alpha-1 Foundation Miami, FL
Email: [email protected] Robert Sandhaus, M.D., Ph.D.
Clinical Director, Alpha-1 Foundation National Jewish Health
Denver, CO
Email: [email protected] Richard Sharp, Ph.D.
Cleveland Clinic Foundation Cleveland, OH
Email: [email protected] Jeffrey Teckman, M.D.
Saint Louis University, School of Medicine St. Louis, MO
Email: [email protected]
Edwin K. Silverman, M.D., Ph.D.
Channing Laboratory Harvard University Boston, MA
Email: [email protected] Charlie Strange, M.D.
Medical University of South Carolina Charleston, SC
Email: [email protected] Kim Symonds
Save Babies Through Screening Foundation INSERT LOCATION
Email: [email protected] Bradford Therrell, Jr., Ph.D.
National Newborn Screening and Genetics Resource Center
University of Texas Health Science Center at San Antonio
San Antonio, TX
Email: [email protected]
Judi Tuerck, RN, MS Aloha, OR
Email: [email protected] John W. Walsh
Alpha-1 Foundation Miami, FL
Email: [email protected] Adam Wanner, M.D.
Alpha-1 Foundation
University of Miami, Miller School of Medicine
Miami, FL
Email: [email protected] Benjamin Wilfond, M.D.
Seattle Children’s Hospital
University of Washington School of Medicine Seattle, WA
Email: [email protected] Mark Yarborough, Ph.D.
University of Colorado at Denver and Health Sciences Center
Aurora, CO
Email: [email protected] Jorge Zamudio
Alpha-1 Foundation Miami, FL
Email: [email protected] Brad Zelk
Lee’s Summit, MO
Email: [email protected]