PC News Brief
Vol 17, No. 4 Aug-Oct 2022
Greetings from PC Project!
This month, we are experimenting with a new way to bring you our news. Please check out the sections below for some of the happenings in our PC world.
Most of all, never forget that we are always fighting for every patient in our community, and we appreciate the efforts each one of you bring to our special, global team!
Virtual Patient Meeting
Join with the PC community on November 19, 2022, from 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time) for a few hours of presentations and discussions! The meeting will be free and held in a Zoom meeting format.
Because we want to be inclusive to as many people as possible, like last year, we will use the translation software Wordly, which translates the spoken English words of the meeting into spoken and/or written languages. Learn more and register
Patients in Amsterdam
On Tuesday, September 27, 2022 at the Beurs Van Berlage Conference Center, patients and family members gathered for an afternoon meeting that included socializing, lunch, and a chance to meet others who understand what it’s like to live with PC.
Some of our fantastic PC scientists and doctors attended to answer questions, present information about PC, and show patients there are professionals who truly care about PC and PC patients! Read more and see photos
PC Leadership Meeting
Key members of the PC Project Medical and Scientific Advisory Board met in Amsterdam on September 28, 2022 for a robust 6 hour strategic planning meeting, organized under the leadership of Eli Sprecher and Pierre Coulombe. The goal: To make PC Project operate even more effectively and efficiently, with the help of an excellent team of researchers and clinicians. Read more and see photos
ESDR Meeting 2022
PC Project was invited to display and share information about PC at a patient village at the ESDR (European Society of Dermatology Research) Conference, September 28-30, 2022. Thanks to the graciousness of the ESDR leadership for the opportunity to attend sessions, educate researchers about PC, and to network with additional doctors and scientists about joining the the PC fight! Read more and see photos
PC Fundraiser: Quinoa Harvest and Andean Festival
What do a Quinoa Harvest and Andean Festival and PC Project have in common? They’re both all about improving the health and lives of others! One of our PC researchers, Dr. Roger Kaspar, planned and hosted the event on a fun Saturday full of Peruvian music and food, education, and hiking (ATV transportation for PCers) in Panguitch, Utah on Saturday, September 17, 2023. All proceeds went to support PC Project. Thanks to Dr. Kaspar for his commitment to PC patients – in and outside of the research lab! Read more.
Minnesota Patient Gathering
PC Project spent a few days in the land of 10,000 lakes with a special group of PC friends. On August 12-13, 2022, we hosted a small patient gathering in Minneapolis, MN. Some patients were there to be screened for a clinical trial. Others simply came to encourage one another and feel the strength of the PC community.
We are grateful for these awesome people who show up for clinical trials (essential for getting therapeutics approved) AND who show up for each other. These gatherings are a good reminder of how meaningful it is for patients who have never known another person with PC to finally meet someone who truly gets what it’s like to deal with this unique and rare condition! See pictures from the event and learn more
The Power of Genetic Testing
In an article called, “We Need to Talk about Zebras,” Dr. Neil Rajan and Genomics England highlight the need for diagnostic genetic testing.
Most patients who join the International PC Research Registry do not have a correct diagnosis for their condition. Two patients who joined and received free diagnostic genetic testing through PC Project were interviewed for the article. Thanks to Tom Baker (PC) and Alan Bentley (OS) for sharing your important video stories. Read the article and watch the interviews.
Gifts for Our Future
Last spring, one of our beloved PCers,
Nancy Bohnsack passed away after a short but valiant fight against cancer. Unbeknownst to us, Nancy graciously left a portion of her estate to PC Project. Although we didn’t know we were part of her will at the time, now Nancy will always be a member of PC Project’s Legacy Society, a special group of people who have included PC Project in their long-term gift planning.
In fact, several years previously, David Wittmer, another dear PCer, passed away and left his estate to PC Project. David’s gift was the catalyst for establishing PC Project’s long-term sustainability fund which ensures that we will continue to fight for patients for many years to come.
We are humbled by the goodness and generosity of our PC community and invite you to consider being part of this special Legacy Society. Learn about the PC Legacy Society
Amy Paller, PC MSAB Member, Receives Award
Congratulations to Dr. Amy Paller, a members of PC Project’s Medical and Scientific Advisory Board, for receiving the Society for Pediatric Dermatology’s first Hall of Fame Award during its 47th Annual Meeting in Indianapolis on Sunday, July 10.
The criteria for this honor includes being an SPD member for at least 30 years and having made substantial contributions to the organization and field of pediatric dermatology.
Dr. Paller has been a compassionate physician for PC patients for many years and a fantastic collaborator in the International PC Consortium. Read more
Plan now to attend, especially if you live in the United States. More registration details will be available soon.
NOTE: Our patient meeting will be held right before the American Academy of Dermatology Annual Meeting in New Orleans, where several of our PC dermatologists/researchers will be speaking about PC and other diseases with painful palmoplantar keratoderma. We invite dermatologists who are going to the AAD to not only plan to attend our PPK session (March 18, 2023), but come early and join our special patient meeting.
