IPCC Meeting

At the first of this May, Mary and I went to Los Angeles to host the fourth annual International Pachyonychia Congenita Consortium (IPCC) meeting. We typically hold it in conjunction with the annual SID (Society of Investigative Dermatology) meeting, usually the day before the SID meetings officially begin.

The decision to have an annual IPCC meeting was made at the very first symposium in Park City when scientists first gathered to discuss PC research. It is a way of staying in touch - in person - even though our consortium members, especially the primary researchers, are in touch weekly, even daily sometimes. But, because our scientists are spread throughout the world, it's an excellent opportunity to come together once a year, learn and be connected to the latest findings. Scientists give presentations on what they've accomplished, discovered, etc. and then the group discusses and makes research decisions for the upcoming year.

I've been very blessed because of my role with PC Project to be a hostess for PC Project at these meetings. Scientific meetings are typically not for patients. These are some of my non-scientific observations about this latest IPCC meeting:

Observation #1 - This time, like every time, I'm amazed the scientists came. They take extra time and costs to come a day early to the SID meetings in order to attend our meeting. Some come only for our IPCC meeting. They come from all over the United States, and the world too - Scotland, Singapore, China. Mary and I got a few chuckles when Mary received calls from anxious secretaries who wanted to be sure the scientists or doctors they worked for would be allowed to attend. We're thrilled to have these scientists attend and it's hard to imagine them asking 'is it okay?' As this IPCC meeting asked for pre-registration, I thought it interesting that scientists wanted to be sure to be included. PC Project gave a travel stipend to each registered person who attended and offered the option to return it as a donation. Almost all returned the stipend to PC Project. What it is about this PC consortium that is drawing the attention of big names (and great minds) in research? What is it about this group that makes people so generous with time and resources?

Observation #2 - Although we required pre-registration for this IPCC meeting, many (about 30), who were attending the SID meeting and were not registered for the IPCC, came and sat in the back at the IPCC. We always set up the conference room in a large U-shape to promote discussion after the presentations. There is an assigned seat for everyone. But in the back this time, every extra chair was filled, people were standing against the walls, and the hotel people kept bringing in more chairs. I've never seen anything like that at one of our IPCC meetings before. I can only guess that maybe they read the main SID program which announces our PC meeting as an ancillary meeting. Then, after reading who was presenting, they wanted to come and hear these incredible scientists. We do have some impressive names on our team. My other thought is maybe PC research really is vaild. Maybe we do have something. We think so. Maybe others are starting to think so, too.

Observation #3 - PC is becoming more familiar among dermatology scientists. The SID meetings officially began the day after our IPCC meeting. Part of those meetings include oral presentations and poster presentations. At certain times, the author of the poster is available to discuss the research while other scientists who are interested can seek them out. They are given the opportunity to talk about the research presented. It seems to me to be a great opportunity to exchange ideas and learning and to generate interest. It's quite an experience for me to walk up and down the rows of 1000 or more posters and scientists. The thing I found most fascinating was to hear other scientists refer to what they called "PC Row." There were so many posters that included the word, "Pachyonychia." I'm not naive. The world of skin-related research is enormous. But I think three years ago, there would never have been a "PC Row" at a meeting such as the SID where thousands of scientists participate. I am incredibly grateful for what scientists are doing to help us when we are such a rare disorder.