Meet The Team
Recognized since 2004 as a public charity in the USA, Pachyonychia Congenita Project (PC Project) connects patients, researchers, physicians and industry partners in a united and global effort to help those who suffer from the debilitating effects of this rare, genetic skin disease.
PC PROJECT BOARD OF TRUSTEES
Jack Padovano, Chair
Jason Hunter, Treasurer
Barbara Feinstein, Secretary
C. David Hansen, Trustee
Kay Dee Holmes, Trustee
James Rittle, Trustee
Janice Schwartz, Trustee
PC PROJECT STAFF MEMBERS
Janice Schwartz, Executive Director
Holly Evans, International Patient Support Officer
Joanne Udy, Bookkeeper
MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB)
Click on the name for further information on each member.
*Pierre A. Coulombe, PhD, University of Michigan, Ann Arbor, MI, USA
Tracy L. Funk, MD, Oregon Health Science University, Portland, OR, USA
Philip D. Gard, MBChB (retired), England UK
*C. David Hansen, MD, University of Utah, Salt Lake City, UT, US
Ángela Hernández Martín, MD, Hospital Infantil Universitario del Niño Jesús, Madrid, Spain
Robyn P. Hickerson, PhD, University of Dundee, Dundee Scotland UK
Alain A. Hovnanian, MD, PhD, University of Paris, Paris, France
Peter R. Hull, MD, PhD, FFDERM, FRCP, Dalhousie University, Halifax, Nova Scotia, Canada
Roger L. Kaspar, PhD, TransDerm, Inc, Santa Cruz, CA, USA
David Kelsell, PhD, Queen Mary University of London, London, England UK
E. Birgitte Lane, PhD, FRSE, FMedSci, Institute of Medical Biology, Singapore, Singapore
Sancy A. Leachman, MD, PhD, Oregon Health Science University, Portland, OR, USA
Evelyn Lilly, MD, Massachusettes General Hospital, Danvers, MA, USA
John A. McGrath, MD, PhD, King’s College, London, England UK
*Edel O’Toole, MD, PhD, FRCPI, FRCP, Queen Mary University of London, London, England UK
Amy S. Paller, MD, Northwestern University, Chicago, IL, USA
Michael Polydefkis, MD, Johns Hopkins University, Baltimore, MD, USA
Dennis R. Roop, PhD, University of Colorado, Aurora, CO, USA
*Eli Sprecher, MD, PhD, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel
Peter Steijlen, MD, Maastricht University Medical Center, Maastricht, Netherlands
Jean Y. Tang, MD, PhD, Stanford Dermatology, Redwood City, CA , USA
Joyce M. Teng, MD, PhD, Stanford University, Palo Alto, CA, USA
* also serve on the IPCC Steering Committee, they are pictured below.
THE PC LEGENDS: Honorary Members
We are grateful to those who have made a difference for PC patients by advancing research and building the foundation for PC Project. The organization is where it is today because of the sacrifice and service of many and each person’s role has been critically important. Even though some of these key people are no longer actively involved, they will be in our hearts forever. A special thanks to each of the following:
Sherri J. Bale, PhD
W.H. Irwin McLean, PhD, DSc, FRS, FRSE, FMedSci
Leonard M. Milstone, MD
Mary Schwartz, Founder
Frances Smith, PhD, Dundee, Scotland UK
Maurice A.M. van Steensel, MD, PhD
PC ADVOCATES USA
Julianne Bennett, Christine Block, Albert Bravo, Roseann McGrath, Lisa Noe, Jack Padovano, James Rittle, Janice Schwartz, Stephen Wittmer
PC ADVOCATES EU
Tom Baker, Paolo Cognetti, Kieren Eyles, Kathryn Fairbrother, Philip Gard, Melanie Hettler, Pamela Ibáñez Triguero, Katri-Anna Lehto, Soe Mattijssen, Julie Peconi, Sylvie Potier
INTERNATIONAL OUTREACH
PC Project provides services throughout the world and currently serves patients in nearly 60 countries. No matter where you live, PC Project is here to provide services and support for patients, physicians, and researchers.
Pachyonychia Congenita Project Europe is a Scottish Charitable Incorporated Organisation (SCIO), Scottish Charity number #SC046480, registered on 15 April 2016, and is part of PC Project.
In some countries, PC patients have united to support PC Project:
- Brazil. Dermatologia.net is an important site which makes available information in Portuguese about PC
- France. Le Coeur au Pied is a charity for PC patients in France which supports PC Project. The president is Sylvie Cierpucha. This group is exceptionally effective in patient recruitment, information sharing and fundraising for PC Project for research and patient services.
