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PC Project was first recognized as a public charity in the USA in 2004. The goal: Find a cure for Pachyonychia Congenita.
The day the very first PC scientific conference ended in February 2004, my grandson who was seven years old asked 'So, did you find a cure?' That question pierced my heart and I have never forgotten the trust and expectation that question held for me. We have never lessened our efforts or changed our purpose. However, we have learned so much in these years.
We now know that the question isn't 'did you find...' but the question really is "did we find..." Progress since 2004 has been driven by active patient participation -- those who have joined in the patient registry, attended patient meetings and responded to numerous surveys and small studies. The PC patient community has a direct impact on the research goals and direction at PC Project.
As we understand more about PC through larger numbers of patient participants, we realize the cure isn't hiding out there somewhere. In fact, we won't 'find' the answer -- we will have to 'develop' the drug or treatment for PC. We've change the word from 'find' (which is somewhat passive) to 'fighting' for a cure which much better describes the effort required to develop a new treatment.
Also, we have realized 'cure' is an interesting word. For many, it brings to mind trading out the gene that has the mutation for a new copy without PC. We realize that 'effective treatments' is a more correct description of the cure we seek for PC. This may be in the form of drugs that turn off the effects of the gene, or drugs that turn up other non PC genes to overcome the effects. Many different approaches are being developed and tested. PC isn't just one disorder, it is a syndrome of conditions and there is not just one pathway to success especially when we are here to help every patient across all five genes and each of the nearly 100 mutations.
At PC Project, we are fighting for a cure, connecting and helping patients and empowering research. And, we are successful because of the participation from the patient community. Thank you for joining with us as we move forward to success in these areas.