PC Newsletter
Vol 19, No. 3
May-Jun 2024
At PC Project, our mission has always been more than disease awareness – we aim to cure PC. For 20 years, that has meant giving patients real answers for why their feet and skin hurt so much (including a correct diagnosis), educating people with solid data who have the power to make a difference, and facilitating and funding research for the purpose of developing meaningful treatments to #StopPCPain.
Along the way, we’ve connected with remarkable people – patients (and not just those with PC), family members, friends, researchers, physicians, and pharmaceutical professionals. United we have accomplished what previously seemed impossible, and we will keep striving until we have that cure. And though we are in a marathon instead of a sprint, we appreciate that you “run” with us, pacing us with your commitment to this worthy cause.
The activities highlighted in this newsletter only scratch the surface of the dedication we witness daily in our PC community. Because of all of you, we are truly #StrongerTogether.
Scholarship Deadline Extended to August 1 for European Patients Wanting to Attend the Lisbon Meeting
We are less than two months from our PC Patient Support Meeting in Lisbon, Portugal on September 1-3! Get ready to connect, learn, be inspired, and create unforgettable memories with our amazing PC community!
As we celebrate 20 years of patient meetings, we are thrilled about the all-star list of PC experts who will join us to answer your questions and give you the latest information on PC research and clinical trials. (See picture below.)
If you live in Europe and need some assistance getting to the patient meeting in Lisbon, don’t be afraid to ask. The application process is easy and because of some recent additional funding, we can provide for more European patients to attend. The extended deadline for financial assistance is now August 1.
But please apply as soon as possible so we can plan!
We can’t wait to see as many of you there as possible.
PC Project Now Accepting Research Grant Proposals
Scientists with a PC-specific research proposal are invited to apply for one of our PC Project funded grants before August 31:
- Catalyst Research Grants – up to $50,000Designed to support talented early-career scientists on the path toward becoming the next generation of PC thought leaders by supporting hypothesis-driven research projects. (An early-career scientist is someone in a tenure track faculty position at a grant-worthy institution for less than approximately 6 years.)
- PC Project Champion Research Grant – up to $100,000Encourages established researchers to pursue research on ongoing or emerging challenges in PC or to bring their expertise to the field of PC.
We welcome any proposal that is focused on addressing the genetics, pathophysiology and/or treatment of pachyonychia congenita (PC). Relevance to PC will be considered a defining criterion during the review of the scientific merit of proposals and also when making final decisions regarding their funding.
Click for more information including the grant guidelines and the application link.
PC Project hosts the 20th International PC Consortium Symposium in Dallas
PC Project hosted the International Pachyonychia Congenita Consortium (IPCC) Symposium as part of the annual Society for Investigative Dermatology (SID) Meeting on May 15 in Dallas, Texas. This year was extra special because it marked the 20th anniversary of one of PC Project’s most powerful programs – the consortium of scientists and physicians dedicated to PC and similar painful palmoplantar keratodermas.
Our symposium theme, “Driven by Love, Guided by Science” reflected the remarkable efforts over the past 20 years of professionals who have shared their time, talents, and skills with PC Project on behalf of patients globally. We unashamedly admit that love is the primary motivator in everything we do. But we are not just a fluff, feel-good organization. We are science-based through and through.
Also, for the first time, our IPCC joined forces with another group of researchers who hosted the inaugural Darier’s and Hailey-Hailey’s Disease Symposium. Many scientists attended both events, sharing ideas and fostering potential collaborations to benefit patients with PC and other painful PPKs as well as Darier’s and Hailey-Hailey diseases.
The IPCC Symposium was followed by a PC Medical and Scientific Advisory Board Meeting and in the days to follow, PC Project hosted an exhibit table at the SID where researchers could network and learn more about the programs and services of PC Project including our IPCC and patient/research registry.
See photos and more information about the two symposia and the excellent week we had learning and collaborating in Dallas with some of the top researchers in the world in our disease space.
PC Project sincerely thanks the IPCC leaders and also the following sponsors of our IPCC Symposium for making our 20th meeting such a great success:
Experts in PPKs and Ichthyoses Convene in Paris for Reclassification Project
PC Project is participating with a group of international experts to reclassify ichthyoses and palmoplantar keratodermas. The group of 18 experts, including representatives from two patient organizations, has been meeting regularly as a large group and in sub-groups, some starting as long as two years ago. Janice Schwartz, PC Project’s executive director, was invited to participate on behalf of the many patients in the International Pachyonychia Congenita Research Registry who suffer from genetic skin conditions with palmoplantar keratoderma, including PC.
All participants came together in Paris on April 28-30, 2024 for three intense work days to combine the collective progress of the team and continue the project. Along with robust discussion, great respect and collaboration resounded from these professionals whose forward thinking ideas will benefit these diseases in the future. The project is ongoing but expected to be completed in the months ahead.
Read more about the project and see photos here.
PC Project Represented with Three Posters at the World Congress for Rare Skin Diseases
PC Project’s Executive Director, Janice Schwartz, participated with the Paris World Congress of Rare Skin Diseases on June 13-15, 2024 as physicians, scientists, and patient organization representatives gathered from around the world to network and present science and knowledge about rare skin diseases.
Three posters from PC Project were featured at the congress to raise awareness about PC and the work PC Project is doing, along with Quality of Life data, and data from the other diseases in our registry.
Many thanks to Ashley Wittmer, Dr. David Hansen, and Professor Edel O’Toole for their help with our posters.
See and read the PC posters shared at this event.
Running for Those Who Can’t
Samantha Lassen is an excellent example of raising awareness for PC! She does not have PC herself, but some of her dear family members do. Sam is running a half marathon in September to raise funds for PC research. Thank you, Sam, for running for those who cannot run right now, but hope to in the future!
You can read about Sam’s training and show your support for her here.
Camp Discovery for Kids
Every summer, in the United States, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of Camp Discovery — a camp designed specifically to meet the medical needs of kids living with chronic skin conditions including PC and other palmoplantar keratodermas.
PC Awareness Month
Once again, thanks to all who made June such a meaningful month of raising awareness for PC. We may be rare, but we are mighty and because of you, more people know about PC than ever before, and they especially know how it feels to #WalkInMyPCShoes.
If you wish to watch any of the videos from the campaign or read a story shared by one of our courageous PCers, Mike McCullough, you can find them here on our website or on our Pachyonychia Congenita Project YouTube channel.
And for all who donated during the month of June and the first week of July, including you monthly donors, all your gifts will now be matched for an even greater impact. Thank you!
Love Builders Campaign
n May, we held our Love Builders campaign to invite those who wish to regularly sustain the mission of PC Project by giving on a monthly basis.
We can’t thank you all enough for your kindness and your trust in our efforts. We are grateful to those who give on an ongoing basis and to those who give when they can.
We are blessed to have very little overhead at PC Project, which means your gifts go directly to our mission of helping and connecting patients, empowering research, and finding a cure for PC.
To be a monthly donor (for any amount), simply set up your reoccurring gift or a one-time gift here.
