July 2026 | Vol 21, No. 4
In This Issue:
- Mission Progress: Expanding Our Reach, New PC Project Staff
- Patient Voices: Still Fighting, Generations of Strength
- Research & Studies: BAD Conference, World Congress on Rare Diseases, Clinical Trials Update, A Pioneer in Vietnam
- Community & Events: Town Hall Zoom Meeting, London Patient Support Meeting, PC Project Session at ESDR
- Get Involved: Giving Through DAFs
- With Gratitude: Lemonade and Golf Fundraisers
Expanding Our Reach: Important Update About the Future of PC Project
After many months of study, discussion, expert consultation, and careful consideration, the PC Project Board has approved a soft rebrand that better reflects both the evolving science and the broader palmoplantar Epidermal Differentiation Disorder (pEDD) community we serve.
First and most importantly:
- PC Project remains fully committed to the PC community.
- PC Project will continue to provide patient support programs and maintain the patient registry.
- PC Project will continue to advance research that leads to drug development and effective treatments for PC.
- In short, PC Project will continue to focus on improving the lives of people living with PC.
So what is changing? Read more here.
Register for the live Town Hall to learn more.
PC Project Welcomes Juli Bennett and Alicia Cherrington to Our Team
PC Project is pleased to welcome two new members to its communications team: Juli Bennett, Director of Communications & Community Engagement, and Alicia Cherrington, Communications Specialist.
Juli brings both professional leadership experience and a deeply personal connection to the PC community. As someone who lives with PC, which has afflicted her family for at least six generations, she understands firsthand the importance of connection, support, and clear communication for patients and families.
Alicia joins PC Project with a background in engineering, project management, education, and communications. Alicia said, “I have immense love and respect for my family members with PC and am eager to help work toward finding a cure. I look forward to helping share their stories and contributing to the organization’s mission.” Her analytical mindset, organization, creativity, and mission-driven approach will support PC Project’s efforts to communicate more effectively with the global PC community.
Learn more about Juli and Alicia here.
Still Fighting: Jane’s Story
Jane Santos lives in Fort Worth, Texas and has spent her entire life navigating the realities of PC – as a patient, a mother of children with PC, and now a grandmother to the next generation. Her story is one of endurance, love for family, and a fierce determination to keep moving forward despite constant pain.
“Physical limitations don’t stop you from success. Your mind is the only thing that stops you. Still fighting.”
Continue reading about Jane’s story here.
Generations of Strength: Astrid’s Story
For 22-year-old Astrid Santiago Santos, PC is more than a diagnosis. It’s part of her family’s story.
Astrid grew up watching her mother live with PC. One of her two older sisters has the condition as well. Today, Astrid is a mother herself, and her one-year-old son has inherited the same genetic mutation. Of her family’s five nieces and nephews, three have already begun showing symptoms.
“PC has shaped generations of my family,” Astrid says.
Learn more about the Santos’ family’s strength here.
PC Research Presented at BAD Conference
PC Project and data from our registry were represented by researchers from Queen Mary University of London during the 106th Annual British Association of Dermatologists (BAD) Conference in Manchester, England, June 30–July 2, 2026.
Dr. Rebecca McCarthy presented important findings on PC in children, and Dr. Marianne de Brito presented new discoveries related to PC cysts (steatocystomas). Of note, Dr. de Brito was invited to speak in the BAD plenary scientific section as a prize for winning Best Presentation for a Clinical PhD.
Much of this significant research was made possible through the use of de-identified data from PC Project’s International Pachyonychia Congenita Research Registry.
PC and pEDDs at World Congress on Rare Skin Diseases
We were so pleased to see PC and related painful pEDDs have such a strong presence at the World Congress on Rare Skin Diseases in Versailles, France, July 1–3, 2026.
Professor Edel O’Toole highlighted pEDDs in a major presentation on the opening day of the congress. She also presented a poster on the pediatric features of children with PC on behalf of Dr. Rebecca McCarthy, who was simultaneously presenting the same research at a different conference in England.
Another PC Project genetics team member, Dr. Stine Bjørn Gram, presented research on AAGAB-pEDD. (To date, our registry has provided a genetic diagnosis for 22 people with AAGAB-pEDD.)
It was also exciting to see our friends at BioMendics, Drs. Karen McQuire and Aleesha McCormick, share their company’s development pipeline, which includes a potential therapy for pEDDs such as PC.
Preparing for Clinical Trials
PC Project and Orvida Pharma are continuing to partner to preprare for new clinical trials for PC patients. We are grateful to the patients who are currently helping to evaluate the viability of using insoles with sensors in studies.
We are also working with Orvida on a study for Olmsted patients (TRPV3-pEDD and PERP-pEDD). These individuals have similar features to PC and are a valued part of our community.
In the meantime, PC Project continues to engage with other companies to explore potential treatments for PC and related pEDDs. We will share additional updates with the community as soon as we are able.
A Pioneer in Vietnam: Bringing Hope to Patients with Pachyonychia Congenita
Over the past decade, Dr. Vu Van Quang, MD, PhD, has become a leading specialist for patients with PC in Vietnam. What began in 2015 as a puzzling case involving a six-year-old girl with unexplained nail and skin symptoms led Dr. Quang to PC Project and, ultimately, to Vietnam’s first genetically confirmed diagnosis of PC. Since then, he has become the country’s leading advocate for people living with PC, helping families find answers through PC Project’s registry and connecting them to the global PC community.
Read a Q&A with Dr. Quang as he reflects on his remarkable journey, the resilience of his patients, and his vision for improving the lives of those affected by PC by clicking here.
Mission Rebrand: Town Hall with PC Project Leadership
We invite you to join us for a Town Hall meeting on Tuesday, July 21, 2026 at 12 pm MT/ 2 pm ET for greater insights about our plans to expand PC Project’s reach as noted in the article above.
During this Zoom meeting, members of the Board, Mission Expansion Task Force, and Medical and Scientific Advisory Board will provide additional context, discuss what comes next, and answer your questions live. If you cannot attend, a recording will be made available later.
Deadline is July 21st to Register for Patient Support Meeting
IMPORTANT! The final day to register for the London Patient Support meeting is July 21st. That is also the last day to get the discounted room rate at the meeting hotel.
Our annual Patient Support Meeting will begin late afternoon on Thursday, September 3 and will conclude after lunch on Saturday, September 5.
We can’t wait to meet with our PC Project community and enjoy research and educational presentations, group discussions, and being with people who truly understand. A full children’s program will run concurrently with the adult sessions.
Meeting details including our line up of experts, registration information, and hotel information can all be found on our website.
PC Project at the European Society for Dermatological Research Annual Meeting
PC Project will have a special scientific (and lunch) session during the main program of the European Society for Dermatological Research (ESDR) on September 10, 2026 at 13:15 in Heidelberg, Germany.
If you’re coming to the ESDR, plan to join us for an hour of excellent research AND a free lunch!
The session, “Rare Skin Diseases, Broad Insights: From Keratins to Therapeutics in Pachyonychia Congenita and Related Painful Palmoplantar Epidermal Differentiation Disorders (pEDDs),” will highlight recent scientific advances, demonstrating how rare disorders can provide broad insights into skin biology and translational medicine.
Learn more about the session here.
Support PC Project Through a Donor-Advised Fund (DAF)
In case you didn’t know, another meaningful way you can help patients and fund research is through your Donor-Advised Fund (DAF). A Donor-Advised Fund is a simple, tax-efficient way to support the causes you care about. You can recommend a grant from your DAF to PC Project to help improve the lives of people living with PC and other painful pEDDs. Donor-advised funds allow you to make charitable contributions, receive an immediate tax deduction, and recommend grants to qualified nonprofits like PC Project over time.
Learn more about DAF donations here.
Lemonade Stand Fundraiser for PC Research.
A neighborhood lemonade stand raised more than $400 for PC Project on June 13 while helping friends, neighbors, and community members learn about PC.
The fundraiser was organized by Taelor Rynearson, along with her sister Morgan and nieces Hazel, Millie, and Posie, in honor of Taelor’s younger sister, Rylee Defebaugh, who lives with PC.
Taelor wrote, “As Rylee gets older, her condition has become more painful, and I’m tired of watching her suffer in silence. She isn’t a little girl anymore and is entering a phase of life where her health deeply impacts her future, and it’s time we start talking about it.”
Learn more about why supporting PC research is so important to Taelor and her family.
Golf Tournament Benefits PC Community
A huge thank you to James, Quinn, and Blake Robertson for organizing the inaugural “Swing Fore PC” golf tournament in support of the PC community!
Held during PC Awareness Month, the event brought together 41 golfers, generous sponsors, local businesses, and community supporters for a day of golf, fundraising, and education.
The tournament raised $6,308.46 CAD through registrations, sponsorships, raffles, donations, and even a walk on Lego bricks – so the golfers could feel what it’s like to have PC!
Learn more and get ideas to plan your own event.
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