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


Board of Trustees photo from left to right: Kay Dee, Jason, Barbara, Janice, Jack, James, and David

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.

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

PC Advocate Training

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.

PC Project Contact Information

Please contact us if you have any questions or if we can be of help in any way. There is no charge for any service provided by PC Project. All of our work is supported by donations to our charity.

BY EMAIL

info@pachyonychia.org

BY MAIL

PC Project P.O. Box 17850 Holladay, UT 84117 USA

BY UPS, FEDEX, DHL

PC Project 2350 Arbor Lane #850 Holladay, UT 84117 USA

PHYSICAL OFFICE LOCATION

111 East 5600 South, Suite 314 Murray, UT 84107 USA

BY PHONE

801-987-8758 (There is a 24 hour voicemail answering service)