Mission Statement

PC Project was first recognized as a public charity in the USA in 2004. The goal: Find a cure for Pachyonychia Congenita.

BACKGROUND:

The day the very first PC scientific conference ended in February 2004, founder, Mary Schwartz’s grandson who was seven years old asked ‘So, did you find a cure?’ That question pierced her heart and we have never forgotten the trust and expectation that question held for PC Project. 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. In our slogan we’ve changed 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.

MISSION:

PC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita, a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry.

VISION:

A day when PC sufferers will live without excruciating pain, isolation, and embarrassment.

VALUES:

  • Hope – We hope for a future with treatments that minimize pain, increase mobility, and eventually cure PC.
  • Love – We show our love by caring for and supporting all members of the PC community.
  • Empower – We empower research and we empower patients to become their own advocates to successfully navigate living with this painful, rare disease.
  • Collaborate – We collaborate with physicians, scientists, industry, and patients across the world to advance research and drug development for meaningful treatments and ultimately a cure for PC

MOTTO:

  • Love, it’s in everything we do.
  • PC Project: It’s all about love.

SLOGAN:

Fighting for a Cure. Connecting & Helping Patients. Empowering Research. Partnering with Industry.

Easy Ways to Give Online

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Donations are needed to keep us moving forward.  Also, see How You Can Help for ideas on many other ways to be involved in supporting the PC Project mission.

PC Patient Registry
Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC