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pc project past event 2004 Grant Award Presentations On April 28, 2004 PC Project held an Award Presentation at the SID meeting in Providence, RI. The presentation was made by Mary Schwartz, Director and PC Project member, Roseann and her husband, Mike. After the presentation, several members of the International Pachyonychia Congenita Consortium [IPCC] met to discuss how to further PC research. Later, at an IPCC dinner additional discussion continued.
2004 Grant Awards Attendee Report I was diagnosed with PC at birth. I am an only child. I am married and have 2 beautiful step-daughters (none of my own). I consider myself a successful professional currently working as the Director of Human Resources for a main line municipality. I am a seasoned professional with 16 years of Human Resources experience. I am so blessed to be married to the most wonderful man on the face of the earth (right up there w/my own father). He is the Police Captain of the same municipality where he has been employed for 23 years.I have not been tested yet so I’m not sure if I am PC 1 or 2 or a combo of both (if that’s possible). Due to incredible healthcare providers and a proactive regimented maintenance program (my hands and feet are debrided every 2 weeks under a physician's care) although not w/out pain, I live an active normal life. My husband and I had the honor and pleasure to assist and accompany Mary to Providence RI last week. It has taken me a few days to absorb and assimilate all that happened at the Press Conference, which actually turned out to be a round table discussion with 5 out of the 6 physicians/scientists who were present to receive their grants. I will attempt to articulate the experience I had in Providence; however, mere words will not be able to capture what transpired and/or the bond that was made. The greatest impact that my visit to RI had on me is that for one of the first times ever, scientists are truly ready, willing and able to collaborate and partner TOGETHER to find us a cure! Or at a minimum, in the interim, to provide intervention and assistance to the PC Project and us. We are no longer genetic mutants or freaks of nature….we are now BLIPS on the medical radar screen! This is HUGE!! This is GROUND BREAKING CUTTING EDGE MEDICAL NEWS, which affects, positively each and every one of us and possibly so many others with similar medical conditions! PC Project, needs our energy, enthusiasm and you as a PC patient to make a difference. Let’s not just sit around and commiserate - We are on the verge of effectuating change. This is an incredible opportunity to learn from each other about our patient care and for breakthrough research not only for PC but other rare diseases - don't sit back. Each of us, in our respective communities can publicize our cause and medical situation because Publicity = Notoriety which = Funding. In summary, I, at first, was somewhat unsure and skeptical of the PC project. Let’s face it, we are so rare and PC is unheard of, that the website was a shock and somewhat an emotional surprise/roller-coaster for each us. However, meeting Mary, Dr. Leachman, Dr. Roop, Dr. Chen, Dr. DiGiavanni, Dr. Milstone and Dr. Fleckman was an absolute honor. The trip to Providence was exhilarating, uplifting and exciting. Mary and the PC project are producing professional results every day. Let’s aspire and strive for continued excellence! Let’s partner together, support the PC Project and not take no for an answer!
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