PC Newsletter Jan-Feb 2025

Welcome to this edition of the PC Project Newsletter! We have exciting updates, upcoming events, and opportunities for you to get involved. Here’s what’s included:

• Upcoming Events
  • PC Patient Support Meeting – May 4-6, 2025, in San Diego! Plan to join us.
  • Annual IPCC Symposium – May 7, 2025, for researchers and physicians.
  • PC & TRPV3 Pilot Study – March 28-30, 2025 – Seeking UK registry patients

• Community & Awareness
  • Rare Disease Day – Share your story and raise awareness.
  • #MyPCValentine Campaign – Show love for your PC heroes!

• Ways to Support PC Project and rare skin diseases
  • Legacy Society – Leave a lasting impact through planned giving.
  • FIRST’s 2025 Research Grants – Funding opportunity for rare skin research.

Scroll down for all the details! Thank you for being part of our incredible PC community. #StopThePain

A Promising Year Ahead: PC Project’s 2025 Vision

Dear PC Community,

As we embark on 2025, I want to take a moment to reflect on the progress we’ve made and the incredible opportunities ahead. This year promises to be one of our most impactful yet, as we expand our reach, deepen our research efforts, and strengthen our community.

At the heart of PC Project is our unwavering commitment to improving the lives of those affected by Pachyonychia Congenita. In 2024, we took significant steps forward, and in 2025, we’re building on that momentum. Our focus this year is clear: expanding awareness, advancing research, and enhancing patient support.

Advocacy & Awareness

We begin the year by growing our newsletter subscription base, ensuring we stay connected with every member of our community. In February, we will shine a light on Rare Disease Day (February 28) with compelling patient stories and increased engagement, reminding the world of the challenges rare disease communities face and the importance of continued research and advocacy.

Research & Scientific Collaboration

A significant milestone awaits us in March, with a key meeting between PC Project and the National Institutes of Health/NIAMS. These discussions are critical in advancing scientific research. In May, our Patient Support Meeting in San Diego will provide invaluable opportunities for patients, researchers, and clinicians to connect, followed by the IPCC Symposium, where groundbreaking research will take center stage. At that point, our annual grant cycle will officially open for applications. Please join us in San Diego!

PC Project will also have a presence at conferences for the Dermatology Nurses’ Association, the American Academy of Dermatology, the Society for Investigative Dermatology, the European Society of Dermatology Research, and the Pediatric Dermatology Research Alliance – all to learn, teach, and network.

Fundraising & Community Engagement

In the coming months, we take a bold step forward with our first true Peer-to-Peer fundraising campaign. By empowering our supporters to create their own fundraising pages and rally their networks, we hope to expand our donor base and strengthen the financial foundation of our mission. Additionally, we will launch a Major Giving Initiative to further engage key donors and supporters.

As we move into the summer, PC Awareness Month in June will bring our community together through a heartfelt video gratitude campaign, showcasing why PC Project is a lifeline for so many. Later in the year, we will focus on planned giving, launching a Legacy Society mailing and potentially hosting a webinar to inspire long-term support.

Looking Ahead

As the year winds down, we will gather virtually for a Tele-Town Hall with researchers, a Giving Tuesday campaign, and a year-end celebration of all we have accomplished. Through it all, our commitment remains steadfast: to accelerate research, provide unwavering support, and ensure that every individual with PC knows they are not alone.

Thank you for being part of this journey. Your support, involvement, and passion fuel our mission. Together, let’s make 2025 a year of hope, progress, and breakthroughs.

With gratitude,

Jack Padovano
Chair, Board of Directors
PC Project 

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Join Us in San Diego: 2025 Patient Support Meeting

We can hardly wait for our Patient Support Meeting, which will be held from May 4-6, 2025 in San Diego, California, at the Hilton San Diego Airport/Harbor Island Hotel.

Prepare now to join us as we learn, teach, and inspire each other in our PC community as patients, loved ones, scientists, and physicians.

Physicians and researchers are invited to come a few days early for the IPCC Symposium and the SID to participate in an uplifting meeting with our patients and their families. Industry representatives are invited to sponsor this special gathering, helping us make it a truly impactful event.

Details and registration here.

PC Project’s Annual IPCC Research Symposium

Attention Researchers and Physicians!

Join us for the Annual International Pachyonychia Congenita Consortium (IPCC) Symposium on Wednesday, May 7, 2025, from 8:00 AM – 2:00 PM PT at the Hilton San Diego Bay Front. This important event is held in conjunction with the Society for Investigative Dermatology Meeting and brings together top scientists in the rare skin disease space for collaborative discussions and research advancements.

Make sure to arrive early and attend our traditional and always enjoyable IPCC dinner on May 6th—a great opportunity to connect with fellow experts in an informal setting.

Registration is free for interested researchers and medical professionals, but pre-registration is required. Industry representatives are invited to participate through sponsorship or a donation to PC Project.

Find more details and register.

PC and TRPV3 Patients to Participate in a Pilot Study

We’re excited to be collaborating with a company (name to be announced soon) on a study focused on developing endpoints for future clinical trials.

We are gathering no more than 15 PC and TRPV3 registry patients from Wales, England, and Scotland for a series of activities in London from March 28-30, 2025. The study aims to determine the most effective ways to measure whether a treatment is working. (Please note: No treatment will be provided at this time.)

Thank you to everyone who has already expressed interest! Official sign-up details will be sent soon to registry patients in these countries, pending IRB approval.

For any questions, email us at info@pachyonychia.org.

Your Story Matters: Share Yours for Rare Disease Day

Rare Disease Day is coming up later this month, and we need YOU to help shine a spotlight on Pachyonychia Congenita (PC) and other rare skin diseases in our registry.

Our mission? To raise awareness and advocate for those living with PC and similar conditions. But we can’t do it without your help! We want to hear from YOU. What’s it like living with your rare skin condition? Your story matters, and we want to hear it!

Share your experience with us here in any language.

If you have a variant in a PC gene (K6, K16, K17) or another gene like AAGAB, TRPV3, DSP, DSG1, GJB2, GJB6, K1, K9, RHBDF2 (and more!), you are part of our unique group – YOU ARE RARE! Let the world know what makes you unique and raise awareness for our disorders.

It only takes a minute to share your journey and help others understand what living with a rare skin condition is truly like.

Let’s raise our voices together and teach the world about our rare skin diseases!

Leave a Lasting Legacy: Join the PC Project Legacy Society

At PC Project, our mission is to cure Pachyonychia Congenita (PC), provide vital patient support, and advance groundbreaking research. Since our founding in 2004, we’ve made incredible strides, thanks to the generosity of our dedicated supporters. Now, you have an opportunity to make a lasting impact by joining the PC Project Legacy Society.

The PC Project Legacy Society is a special community of individuals who have chosen to include PC Project in their estate plans. Through planned giving, you can ensure that PC Project continues its mission for generations to come. Your commitment will help sustain vital research, patient programs, and efforts to bring new treatments to those living with PC.

Ways to Make a Planned Gift:

• Bequests: Include PC Project in your will or trust.
• Retirement Accounts: Name PC Project as a beneficiary of your IRA, 401(k), or other retirement plans.
• Life Insurance Policies: Designate PC Project as a beneficiary.
• Charitable Trusts: Establish a charitable remainder or lead trust to benefit PC Project and your loved ones.

By joining the Legacy Society, you will not only leave a lasting mark on the future of PC research and patient care but may also receive potential tax benefits.

If you’ve already included PC Project in your estate plans or are considering a planned gift, we’d love to hear from you! Your generosity today will create hope for tomorrow.

To learn more about the PC Project Legacy Society, visit www.pachyonychia.org/legacy, email info@pachyonychia.org, or call 801-987-8758.

Thank you for being a part of our journey to cure these rare skin diseases!

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