International Pachyonychia Congentia Consortium (IPCC) Symposium

Last week, I was privileged to sit in on the two-day International Pachyonychia Congentia Consortium (IPCC) Symposium held in Philadelphia. The meeting was held prior to the annual meeting of the Society of Investigative Dermatology (SID) as an associate meeting of that large gathering.

Because this is a scientist only meeting, let me give you a glimpse of how our IPCC meetings work. I tell you because I think it is a unique way that our group collaborates and gets things done.

About 35 scientists and doctors participated in the IPCC meeting. The scientists sit at tables that are set up in a U-shape with the top of U the front of the room where there is a screen and a podium for giving presentations. The room is set up that way because as important as the presentations are, even more important are the discussions among scientists after each presentation or group of presentations. Most of the presentations at this last meeting were based on PC research that was done in the past year or on new science that can have applications to PC research.

As a group, these brilliant minds team up to help one another. They listen and observe, then give insights and suggestions - all for the purpose of finding specific ways to cross the next bridge, overcome current obstacles, or chose the next steps in the quest for reaching a treatment or cure for PC. The title of this year's meeting was "Envision Success: PC Clinical Trials" and the disscussions focused on selecting the most effective strategies to reach clinical trials as soon as possible.

Sometimes the group decides one direction isn’t as effective as another. The discussion is open and honest. In that setting they brainstorm and make choices on what research avenues are the most viable and effective. They choose a course of action for the next steps on other projects. If one lab is doing something, another lab will offer resources or volunteer help or means to move the process along. The collaboration is unbelievable.

And in case you wonder where I am in all this, Mary and I sit at a table in the back, not in the main group. We are not scientists. We listen, learn, take notes, and say our prayers of thanks. And thankful we are. At one point in this two-day meeting of presentations and collaborative discussion, I sat there, simply overwhelmed that these incredible scientists and doctors from around the world were there, talking and planning about MY rare disease. One example is I saw actual photographs of PC inhibitors working in mice. The photos were taken within just the past weeks. If that’s not enough to make a person overcome with gratitude after a life of no hope, I don’t know what is!

On the second day, a question was asked of the group by a researcher who hadn’t been to a previous meeting how many people had PC. Another doctor, who was also participating for the first time responded something to the effect of, “From the looks of this gathering here, you would think one in 60 people had PC!” (Of course in this group 1 in 60 did have PC!) However, this exchange made me realize – though I knew it before – how absolutely incredible it is that not only were these scientists interested in PC research, but the caliber, the expertise of these individuals is unprecedented. They are the world leaders in keratin research! The way they have bonded together and come on board with us at PC Project is simply remarkable, if not miraculous. The core researchers have been with us from the first meeting in Park City just over two years ago. Others have joined the group at just the time we needed their specific expertise. Others have come to bring new ideas and contribute advice and suggestions gained in other areas.

In the week since this IPCC meeting, there’s already been a flurry of activity among the scientists that has come as a direct result of the meeting. At least a dozen collaborations (one lab doing staining needed by another lab, one lab sending cells for another lab to use in an experiment, etc.) We believe everyone left the IPCC meeting motivated – or STILL motivated is probably more accurate – in helping the PC cause.

We are working to post a report of the scientific presentations related to PC that were presented at the main SID meetings so you can see all that has been accomplished for PC and you can see the details. But one thing to note right now is that some of the cutting edge science that is being done for PC was mentioned by the keynote speech at the beginning of the SID meeting given to thousands of dematological researchers. It’s real science and exciting science as well.