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how you can help REGISTER WITH THE OFFICIAL PC REGISTRY (IPCRR) If you have PC, or you think you have PC, the single most important thing you can do to help is to register with the official PC Registry (IPCRR). Because PC is so rare, information about your PC is so important. Information gthered is already having an impotant impact on PC research. Your symptoms and how PC affects your life literally directs the research. Every single PC patient is important and the information gathered is making a significant difference in the planning and goals for PC research. If you are interested in having genetic testing that is provided without cost to those who are in the Registry and desire that. There is no obligation for testing by being in the Registry. EDUCATE Share PC brochures or the PC website with teachers, educators, scientists, physicians and other medical professionals - or have them contact PC Project for more information. Doctors who treat PC Patients can receive access to current information about PC which will best help their patients. Also, educators, teachers and other associates are much more understanding of an individual with PC if they have information about what it is and how it affects the person dealing with PC. ONLINE SHOPPING Check out the “Shopping Online to Raise Funds” in the sidebar box. This is an easy, effortless way to raise money for PC research. When you shop online, instead of going directly to the shopping site of your choice, enter the online store through one of the fundraising links. By doing this, a percentage of any purchase you make automatically goes to PC Project’s research fund. We receive a notice every few days of funds earned and a check comes every quarter. DONATE Donate your time, donate funds, encourage others to donate, sponsor fund raising events or seek grants from your local area. All donations go directly to PC research. No fund donated other than from founders go to any overhead costs (rent, postage, phone and other expenses) so every donation is in direct support of PC research. Coming Soon - a donation chart ***PC STARS*** WHO ARE TAKING ACTION We thought you'd like to see a listing of a few of the wonderful things our *STARS* are doing around the world to make a difference for PC. All of these stars are also participants in the IPCRR research registry. This ***STAR*** set up shopping online in the UK These ***STARS*** are organizing fundraising efforts in the UK including getting local banks and other businesses to contribute. One such event is a sponsored 400 km bike ride by the father of a PC child. One young ***STAR's*** feet are so painful she has a difficult time sleeping because even resting them on her bed hurts. Therefore a local paper chose her to have her bedroom redone in order to help her sleep more comfortably This ***STAR*** set up a PC website for French speaking PCers and is very active in keeping the French PCer community together and feeling supported. Three PC ***STARS*** from the Philadelphia area joined PC scientists in Philadelphia for an awards dinner following the annual International Pachyonychia Congenita Consortium meetings. This was an excellent opportunity for scientists who do PC research to meet real people with PC. These PCers also helped set up and man the PC Project booth at the Society of Investigative Dermatology annual meeting’s Poster session. This ***STAR** from the UK was on BBC-1 "City Hospital" with Dr. Jemima Mellerio on Wednesday, May 24. Thanks for arranging this great coverage. |
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