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Pachyonychia Congenita Project provides this website as a tool for PC patients, their family members and friends, as well as for physicians, clinical researchers, other medical professionals and school staff. In addition, PC Project provides research funding, hosts symposiums, sponsors a PC registry, fosters a PC community including annual patient meetings, supports genetic testing and takes all other active steps toward successfully developing and delivering therapeutics to PC patients worldwide. Our goal is to achieve the Mission Statement. PC Fund was incorporated as a U.S. public charity under section 501(c)(3) in November 2003 and uses the names Pachyonychia Congenita Project, PC Project and PC Fund. In 2007, a UK charity was formed using the name Pachyonychia Congenita Trust. Publications All publications are provided free of charge. Please Contact Us to request copies. If you prefer, you may print the pdf files for your own use. However, if you are distributing the brochures to others, please request the official copies. Thanks. PC Basics for Schools (click here for pdf) For Medical Professionals and Scientists (click here for pdf) Patient booklet (click here for pdf)
Statistics November 2007. We've posted several new graphs based on statistics from the International PC Research Registry. The Count graph shows the number of PC patients and those who have submitted their Questionnaire for the IPCRR. The Status graph shows progress towards genetic testing results for each individual who has submittied their Questionnaire for the IPCRR. The Genetics graph shows the results of the genetic testing in the IPCRR. The PC Summary spreadsheet reports information from the IPCRR Questionnaire listed by specific gene for each of the basic PC signs including thickened fingernails, thickened toenails, plantar keratoderma, plantar pain, palmar keratoderma, steatocystoma or pilosebaceous cysts, follicular keratoses, natal or prenatal teeth.
We are learning so much from those who participate in the PC Registry. Thanks to each one! We will soon post some data which we may call 'PC myth-busting data' which answers some of those things incorrectly associated with PC in the literature which our data demonstrates may related only to a single family characteristic rather than to PC. Watch for this in the next few weeks. OFFICE STAFF Mary E. Schwartz, Director Holly A. Evans, Administrative Assistant Sancy A. Leachman, MD, PhD, Medical Director Janice N. Schwartz, Patient Advocate
Note: Mary E. Schwartz is a full-time unpaid volunteer. Janice Schwartz is a part-time unpaid volunteer.
Founders The Joel and Mary Schwartz Family of Salt Lake City, Utah founded PC Fund for the specific purpose of funding efforts to develop and deliver therapeutics to PC patients. The Schwartz's have five children and 20 grandchildren. A daughter-in-law, Janice Schwartz, and two grandsons, Sam and Nate Schwartz, have PC and are the inspiration for this effort. All members of the family contribute time and funds to make the project successful. We call our family "JAMS" (for Joel and Mary Schwartz). Here's a Family Photo taken September 2006 and the prior one from 2002. Grandma's life is a joy!
Here is a picture of the office building where our PC Project office is located in Salt Lake City, Utah.
We welcome all who are interested in participating! Please see the How You Can Help section to find out more. We are grateful for comments, suggestions, ideas and encouragement. Medical and Scientific Advisory Board (MSAB) Click on the name for further information on each member.
Patient Advisory Board (PAB) Formed in 2007, this group of ten volunteer PCers from around the world are heading up teams to work on Patient Newsletter, Patient Outreach and Fundraising. If you'd like to participate, please contact us. Board of Trustees David B. Barlow C. David Hansen, MD Roger L. Kaspar, PhD F. Dwight Marchant Mary Seitz Schwartz e-mail Mary Janice N. Schwartz e-mail Jan Lex L. Udy. PhD Translations A short statement about PC Project is available in Dutch, Korean, Finnish, Portuguese, Spanish and Swedish. The statements include a link to send email to PC Project to request translation assistance. Through the voluntary assistance of friends, relatives and PC Project members worldwide, we can usually provide translators for those who cannot utilize this website in English.
Budget and Finances PC Project spent 96% of income on program services and 4% on operating costs, professional services and other over the fives years 2003-2007.
Thank you to all of the donors 2003-2007 who have helped us reach many goals on our way to 'a cure for PC.'
Donations There is a PayPal Donation icon on the website for convenience in making donations from the U.S. or from outside the U.S. Also, donations from those outside the U.S. can be sent in local currency by check, money order, postal draft or bank draft and our bank will convert the funds. We also have several on-line shopping links (see side bar above), so that you can donate funds to PC whenever you shop on-line - you can give more and it doesn't cost you anything. Click here for the iGive link. Once you register, this automatically sends the donation each time you shop. Click here for the Shop For Health link. This works in a similar manner. It costs you nothing to send a portion of your on-line shopping to PC Project. PC Project is registered with GoodSearch.com. To earn a penny for PC Project every time you do an internet seach, click on the GoodSearch link and enter PC Project in the charity field. Those pennies add up and a check is sent to PC Project at the end of the year.
Brief History of PC Project Highlights of PC Project History help us keep track of the amazing progress of PC Project. So much has happened in a very short time. Please Contact Us if you have any questions or if we can be of help in any way. |
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