PC Newsletter
Vol 20, No. 5
Oct 2025
As we enter this season of thanks, here are just some of the highlights from the past few months that we are grateful for:
- Moving the Mission Forward: Update From the Executive Director
- Living with PC: Pain, Stigma, and Hope
- Landmark PC Research Session at ESDR
- First International Symposium on EDDs
- PC Project Makes Global Connections at EADV 2025
- Advocate Represents PC Patients at Ichthyosis Anniversary Event in Spain
- Collaborating for Kids: PC Project at PeDRA 2025
- Building Research Connections at the 2025 Montagna Symposium
Moving the Mission Forward: Update from the Executive Director
The past few months have been a whirlwind of activity for PC Project!
We proudly represented our community at five – yes, five! – major conferences; celebrated our International Research Registry surpassing 3,000 patients; actively started preparing for a 2026 clinical trial; and closed our 2025 grant cycle, with the new proposals now under scientific review.
Meanwhile, our Board of Trustees has formed a task force to explore expanding PC Project’s mission to include all genetic palmoplantar keratoderma (PPK) conditions. This expansion is already happening organically as more and more patients with painful PPK join our registry. We look forward to sharing more details in 2026 as plans unfold.
We also celebrated a major milestone: our first peer-to-peer fundraising campaign. Thanks to the courage of community members who shared their stories and invited friends and family to give, we achieved the largest fundraising campaign in our history. All gifts were matched TWICE by an amazing single donor, totaling $176,250! THANK YOU to all who donated and shared stories!
While that is a tremendous amount of support, the reality is our work requires substantial and ongoing funding. From assisting patients worldwide who have nowhere else to turn, to advancing research that no one else is pursuing – none of this happens without significant resources. Our staff is small (too small!), yet our services and impact continue to grow. That is why I remain deeply grateful to the volunteers and donors who who believe in our cause, and who generously give of their time or money to make PC Project the unique, successful organization that it is.
I’ve always said I don’t want PC Project to be just a ‘neat’ disease awareness organization. I want it to be an organization that makes a significant difference in the lives of all patients who deal with these painful genetic skin diseases – which means a correct diagnosis and practical support now, and real solutions to end the pain once and for all!
I can’t do it alone – so thanks for being in this fight with me.
-Janice Schwartz, Executive Director
Living with PC: Pain, Stigma, and Hope
By Max Morris, PC Advocate, UK (shared for his peer-to-peer campaign).
Despite all the ups and downs I have experienced in my life, one constant has always been pain. Now, that has not always been a bad thing. Pain has taught me to have more empathy, it has made me have to sit down and learn since I cannot be active and it has let me give people an excuse if I don’t want to leave the house!
That said, as I get older and my pain gets worse, it gets harder and harder to manage my condition. I have a rare genetic disorder called Pachyonychia Congenita (PC). All my life I have had blisters covering my feet, chunky fingernails which can get infected and cause strong chronic pain and small bumps on some other areas of my body.
Growing up different came with challenges beyond the pain. Passive exclusion as I could not join in, being looked at strangely due to my appearance or how I walk and my own self-image issues developing from looking different to all my peers.
When I was in primary school, I remember I would come home and just stare at my fingernails filled with an inexpressible grief, knowing I would never be normal and thinking what made me different made me unlovable.
Having PC was never just about the pain, it was about the stigma. People seeing me as an “other” because I look different. People staring at the boy who cannot walk normally. People giving me looks filled with judgement just because I can get out of your wheelchair. It is not always easy to have to juggle “normal” people’s expectations of what a disabled person is, and what I am.
But the PC project granted me hope where I met people like me and in seeing how normal they all are, I reflected and realized everyone in my life must see me like that too. Now they are fundraising, working towards a cure for our condition, but more than that a cure for our exclusion and a cure for self-hatred that so deeply permeates so many people with PC’s mindsets.
If you can donate anything, it would be so appreciated. To be able to support the organization that not only supports me but also works on making it so we can live another day without agony and without anxiety.
NOTE: By sharing this story with friends and family, Max inspired 38 people to give to PC Project in his honor.
Landmark PC Project Session at ESDR
The first-ever PC Project–sponsored research session at the European Society for Dermatological Research (ESDR) Meeting, held September 10–13, 2025, in Antwerp, Belgium, was a huge success!
The session, Pachyonychia Congenita: A Paradigm for Patient-Driven Research from Pathogenesis to Treatment, showcased new cutting-edge research that is shaping the future of therapies for our rare genetic skin disorders. Scientists were encouraged to integrate PC research into their work, and clinicians were invited to refer patients to the PC Project Registry – a vital tool for advancing discovery and patient care.
Heartfelt thanks to Professors Pierre Coulombe, Edel O’Toole, Alain Hovnanian, and Eli Sprecher for planning and presenting this landmark session with us. Their partnership and the energy they brought to the meeting made it unforgettable. Having these research giants work so closely with PC Project – meeting monthly and exchanging countless emails, texts, and calls in between – is a blessing we never take for granted.
We’re also grateful to Neil Rajan, Caroline Baldassarre, and the entire ESDR team for recognizing the importance of patient organizations like PC Project and ensuring patients are represented in research.
Throughout the three-day ESDR meeting, we reconnected with old friends, made new collaborations, and spread the word about PC Project and our registry. Clinicians were invited to refer patients with painful plantar keratoderma—especially those with Olmsted syndrome or TRPV3 variants—in preparation for the upcoming 2026 clinical trials.
See the PC Session Program and ESDR photos.
Because we love to connect with local patients when we travel, we enjoyed a meal and the company of some amazing people in our patient community in Antwerp.
International Symposium on EDDs Unites Experts and Patient Advocates
Having approximately 60 experts gather for the First International Symposium of EDDs (Epidermal Differentiation Disorders) on September 16, 2025, in Versailles, France to focus exclusively on our rare skin diseases was a dream come true for PC Project who is working relentlessly to garner attention in the scientific and medical world.
Thanks to Drs. Antoni Gostynski, Julia Clabbers, Edel O’Toole, Amy Paller, Juliette Mazereeuw, Eli Sprecher, and Angela Hernandez-Martin for including us as equal collaborators in the presentations and group discussions.
In Janice Schwartz’s presentation for PC Project, two facts about painful palmoplantar diseases – like PC – were included that are indicative of all EDDs:
- Our rare skin diseases are often not considered serious in the medical and research world, even though patients suffer with terrible daily physical and emotional pain.
- We lack a significant number of experts who are interested in carving out a portion of their careers to focus on our diseases. (We are changing that!)
We were joined by some of the brightest researchers and clinicians in the world in our field – and we are deeply grateful. This symposium marks the start of a new era that will focused on what our diseases have in common rather than their differences.
Learn more and see photos from the inaugural meeting.
PC Project Makes Global Connections at EADV 2025
In September, for the first time, PC Project attended and exhibited at #EADV2025 (European Academy of Dermatology and Venereology) — one of the world’s biggest dermatology conferences with nearly 19,000 doctors!
The highlight? When three dermatologists from Peru came straight to our booth to meet us and thank us personally for giving them the only resources available to help their local PC patients.
This is what it means to be an international patient organization — connecting with doctors, researchers, and patients globally.
We may not change the whole world, but together we are changing OUR world — one doctor and one patient at a time.
Learn more about the experience here.
Advocate Represents PC Patients at Ichthyosis Anniversary Event in Spain
PC Project Advocate Pamela Ibañez Triguero represented the PC community at a special meeting in Spain on October 3, 2025, that was dedicated to ichthyoses but included other rare skin diseases. Pamela spoke about her personal experiences living with Pachyonychia Congenita (PC), helping to raise awareness and foster understanding among patients, families, and medical professionals.
Pamela was joined by Dr. Angela Hernandez Martin, a member of PC Project’s Medical and Scientific Advisory Board. Together, they highlighted the importance of patient voices in rare skin disease research and care.
Reflecting on the event, Pamela wrote:
“Quiero agradecer a @ictiosis_asic por la invitación a su 25 aniversario y haberme hecho sentir parte de vuestra gran familia. Y a mis compañeras de batalla, que cada una con su historia, llegaron al corazón de todos, siendo todas tan diferentes pero tan iguales a la vez. La piel nos une.”
“I want to thank @ictiosis_asic for inviting me to their 25th anniversary and for making me feel like a part of your big family. To my fellow warriors in battle, every one of your stories grabbed the hearts of all, being different but also the same. The skin unites us all.”
PC Project extends its gratitude to Pamela for representing and serving not only the 20 PC registry patients in Spain, but patients around the world.
If you are interested in being an advocate for your area of the world, please contact us at info@pachyonychia.org.
Collaborating for Kids: PC Project at PeDRA 2025
PC Project participated in the PeDRA (Pediatric Dermatology Research Alliance) Annual Conference in Minneapolis on October 9-11, 2025.
Our goal: to help pediatric dermatologists better recognize PC and related rare conditions with painful palmoplantar keratoderma (PPK) so that patients don’t spend years waiting for a diagnosis. We also encouraged doctors to refer their patients to the PC Registry — a vital tool for advancing research — and shared news about the upcoming 2026 clinical trial for a TRPV3 inhibitor, offering new hope for Olmsted (TPRV3) and PC patients.
Together with PeDRA’s incredible community of pediatric dermatologists, we’re working to bring earlier diagnoses, better care, and real treatments for children and families living with PC and other painful palmoplantar epidermal differentiation disorders (pEDDs).
Finally, because we were not far from some of our Wisconsin PCers, we were thrilled to spend several uplifting, happy hours with some members of our patient community.
Building Research Connections PC Project at the 2025 Montagna Symposium
Thank you to Dr. Sancy Leachman, a member of PC Project’s Medical and Scientific Advisory Board, for the invitation to attend the Montagna Symposium in Salishan, Oregon, October 16-19, 2025. What an inspiring research conference!
We were especially impressed by the format and the many creative activities that encouraged collaboration among all types of attendees. Even the organizers’ clever idea to place the break drinks and snacks on our PC Project exhibit table – bringing people directly to us – was both genius and incredibly collaborative.
Thanks to the organizers for allowing PC Project, a patient advocacy organization dedicated to advancing research, to have a presence at this extraordinary meeting and for making us feel like VIPs – and once again, sincere gratitude to Dr. Leachman for always looking out for PC Project and our patients.
Learn more and see photos from the symposium.
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