Appendix
Meeting Participants:
Erin Pardee
Washington, DC
Email: erin.pardee@yahoo.com
Jen Bauernfeind
Alpha-1 Association Board of Directors
Milwaukee, WI
Email: jenchar@uwalumni.com
Anne Marie Benzinger
Alpha-1 Advocacy Alliance
Wolftown, VA
Email: abenzinger@alpha1advocacy.org
Jorge Bezerra, M.D.
Cincinnati Children’s Hospital Medical Center
Cincinnati, OH
Email: Jorge.bezerra@cchmc.org
Natasha Bonhomme
Genetic Alliance
Washington, D.C.
Email: nbonhomme@geneticalliance.org
Coleen Boyle, Ph.D.
National Center on Birth Defects and
Developmental Disabilities
Centers for Disease Control and Prevention
Atlanta, GA
Email: cboyle@cdc.gov
Mark Brantly, M.D.
University of Florida College of Medicine
Gainesville, FL
Email:brantml@medicine.ufl.edu
Bonnie Chakravorty, Ph.D.
Tennessee State University
Nashville, TN
Email: bonnie.chakravorty@gmail.com
Diane Cox, Ph.D.
University of Alberta
Edmonton, Canada
Email: diane.cox@ualberta.ca
Marlene Erven
Alpha-1 Association
Miami, FL
Email: mserven@alpha1.org
Sally Everett, Esq.
Longmeadow, MA
Email: seeverett1@mac.com
W. Gregory Feero, M.D., Ph.D.
National Human Genome Research Institute
Bethesda, MD
Email: feerow@mail.nih.gov
Symma Finn, M.A.
University of Florida
Gainesville, FL
Email: sfinn@alphaone.org
Charles Gayer
Talecris Biotherapeutics
Research Triangle Park, NC
Email: charles.gayer@talecris.com
Ken Goodman, Ph.D.
University of Miami
Miami, FL
Email: kgoodman@miami.edu
Stephen Groft, Pharm.D.
Office of Rare Diseases
Bethesda, MD
Email: sg18b@nih.gov
Alan Guttmacher, M.D.
National Human Genome Research Institute
Bethesda, MD
Email: guttmach@mail.nih.gov
M.K. Holohan, J.D.
National Human Genome Research Institute
Bethesda, MD
Email: mholoha@mail.nih.gov
R. Rodney Howell, M.D.
University of Miami, Miller School of
Medicine
National Institutes of Health
Bethesda, MD
Email: howellr@mail.nih.gov
Email: mcgeeda@musc.edu
Amy McGrath
Talecris Biotherapeutics
Research Triangle Park, NC
Email: amy.mcgrath@talecris.com
Jon Merz, M.B.A., J.D., Ph.D.
University of Pennsylvania
Philadelphia, PA
Email: merz@mail.med.upenn.edu
Ray Moseley, Ph.D.
University of Florida College of Medicine
Gainesville, FL
Email: Moseley@chfm.ufl.edu
Beth Labasky
Beth Labasky & Associates
Tallahassee, FL
Email: bethlabasky@aol.com
Miriam O’Day
Alpha-1 Foundation
Edgewater, MD
Email: moday@alphaone.org
Jamie Lamson
Alpha-1 Foundation
Miami, FL
Email: mritchie@alphaone.org
Richard Parad, M.D., M.P.H.
Brigham and Women’s Hospital
Cambridge, MA
Email: rparad@partners.org
Michelle Lloyd-Puryear, M.D., Ph.D.
Maternal and Child Health Bureau
Health Resources and Services Administration
Rockville, MD
Email: Michele.puryear@hrsa.hhs.gov
Eeva Piitulainen, M.D., Ph.D.
Malmö University Hospital
Malmö, Sweeden
Email: eeva.piitulainen@med.lu.se
Marie Mann, M.D., M.P.H.
Maternal and Child Health Bureau
Health Resources and Services Administration
Rockville, MD
Email: marie.mann@hrsa.hhs.gov
David Mannino, M.D.
University of Kentucky
Lexington, KY
Email: dmannino@uky.edu
Dawn McGee, M.S., C.G.C.
Medical University of South Carolina
Charleston, SC
Randel Plant
Alpha-1 Foundation
Miami, FL
Email: rplant@alphaone.org
Donovan Quill
Centric Health Resources
Allentown, PA
Email: dquill@centrichealthresources.com
Don Rabush
Alpha-1 Kids
Cathedral City, CA
Email: drrabush@yahoo.com
Marcia Ritchie
Alpha-1 Foundation
Miami, FL
Email: mritchie@alphaone.org
Robert Sandhaus, M.D., Ph.D.
Clinical Director, Alpha-1 Foundation
National Jewish Health
Denver, CO
Email: rasandhaus@alphaone.org
Richard Sharp, Ph.D.
Cleveland Clinic Foundation
Cleveland, OH
Email: sharpr3@ccf.org
Jeffrey Teckman, M.D.
Saint Louis University, School of Medicine
St. Louis, MO
Email: teckmanj@slu.edu
Edwin K. Silverman, M.D., Ph.D.
Channing Laboratory
Harvard University
Boston, MA
Email: ed.silverman@channing.harvard.edu
Charlie Strange, M.D.
Medical University of South Carolina
Charleston, SC
Email: strangec@musc.edu
Kim Symonds
Save Babies Through Screening Foundation
INSERT LOCATION
Email: kpsymonds@aaahawk.com
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: therrell@uthscsa.edu
Judi Tuerck, RN, MS
Aloha, OR
Email: tuerckj@msn.com
John W. Walsh
Alpha-1 Foundation
Miami, FL
Email: jwwalsh@alphaone.org
Adam Wanner, M.D.
Alpha-1 Foundation
University of Miami, Miller School of
Medicine
Miami, FL
Email: awanner@med.miami.edu
Benjamin Wilfond, M.D.
Seattle Children’s Hospital
University of Washington School of Medicine
Seattle, WA
Email: Benjamin.wilfond@seattlechildrens.org
Mark Yarborough, Ph.D.
University of Colorado at Denver and Health
Sciences Center
Aurora, CO
Email: Mark.Yarborough@uchsc.edu
Jorge Zamudio
Alpha-1 Foundation
Miami, FL
Email: jzamudio@alphaone.org
Brad Zelk
Lee’s Summit, MO
Email: brad@brandle.com