Learning, laughter, and love in San Diego, California, as we shared, taught and inspired one another
What a fantastic time we all had a the 2025 Patient Support Meeting May 4-6, 2025 at the Hilton San Diego Airport/Harbor Island Hotel in San Diego, California. Being with people who really understand has been emotional, uplifting, educational, joyous, and so much fun! Oh how we love our PC family!
Thank you to BioMendics, Kamari Pharma, and Ten Bio for joining PC Project in supporting this event. And thanks to all the volunteers in our community who lead discussions, gave presentations, and stepped up to help. We may be small staffed, but we have big-hearted people who serve to make our events a huge success.
Watch the closing slideshow shown on the last day of the meeting that highlights just a fraction of the amazing conference we had with patients, loved ones, researchers, physicians, and pharma representatives. Special thanks to the Ten Bio team for putting this show together for us.
2025 San Diego Patient Support Meeting Program
Monday, May 5th
Location: Marina Pre-Function and Ballroom (2nd floor, Hilton San Diego Airport/Harbor Island)
8:00 – 9:00 am BREAKFAST
Children’s Program 9 am -4:30 pm (Teens also welcome) – Location: Spinnaker & Patio (1st floor, down the stairs underneath the ballroom)
9:30 am Kids Discussion: What is PC & how we feel and deal with PC – Rachel Folger with Allison and Niam
1:30 pm Kids Magic Show – Keane Smith & Aeris Smith
2:00 pm Kids & PC Scientists – Michael Conneely & Robyn Hickerson
Adult Program 9 am – 4:30 pm (Teens also welcome) – Location: Marina Ballroom
Session 1: The Basics Chair: Janice Schwartz
9:00 – 9:20 am PC Project: Driven by Love, Guided by Science
Janice Schwartz, BA, Executive Director, PC Project
9:20 – 9:35 am Understanding the Clinical Features of Pachyonychia Congenita
Michael Conneely, PhD
9:35 – 9:50 am Genetics of PC
Robyn Hickerson, PhD
9:50 – 10:25 am PC and Pain
Robyn Hickerson, PhD & Michael Conneely, PhD
Group Discussion: How has PC pain affected your life? How do you handle the pain mentally and physically?
10:25 – 10:45 am Group Photo & BREAK
10:45 am Session 2: PC Research Updates Chair: Robyn Hickerson, PhD
10:50 – 11:05 am How Laboratory Research and Animal Models Can Help Solve the Complexity of Pachyonychia Congenita
Amanda Orosco, PhD
11:05 – 11:20 am Getting Drugs Into the Bottom of the Foot
Joshua Tam, PhD
11:20 – 11:40 am Our keys to success: the International PC Research Registry and the International PC Consortium
Janice Schwartz – How PC Project unites patients, physicians, and scientists
Edel O’Toole, MD, PhD – IPCC and overview of PC research
11:40 – 12:00 pm Q&A with PC Experts
Robyn Hickerson, Amanda Orosco, Joshua Tam, Edel O’Toole
12:00 – 1:30 pm LUNCH
Session 3: Life with PC Chair: Jim Rittle
1:30 – 2:15 pm Group Discussion: How We Feel and Deal While Living with a Painful Disease: The Emotional, Mental, and Social Impact of PC
Moderated by Roseann McGrath
2:15 – 3:00 pm Insights from Family Members who do not have PC and Group Discussion
Moderated by Rutu Patel, featuring Kimberly Sligh (mother), Phillip Baker (spouse), Dawn Christensen (mother & spouse).
3:00 – 3:30 pm Stepping Into the Light: The Power of Sharing Your PC Story
Jack Padovano
3:30 – 3:45 pm BREAK
3:45 – 4:30 pm Mutation Group Discussions by PC Types. (Both patients and family members join the groups)
- PC-K6a – Meg Jenkins & Roland Holliday
- PC-K17 – Amanda Guhabiswas & Jeff Christensen
- PC-K16 – Janessa Gambell & Jasper Vale
4:30 – 6:30 pm FREE TIME
6:30 pm DINNER Location 9th Floor in Skyline & Lindberg Room with Magician Keane Smith
Tuesday, May 6th
Location: Marina Pre-Function and Ballroom (2nd floor, Hilton San Diego Airport/Harbor Island)
8:00 – 9:00 am BREAKFAST
Children’s Program 9 am – 12:00 pm (Teens also welcome) – Location: Spinnaker & Patio (1st floor, down the stairs underneath the ballroom)
Games, Activities, and Crafts
Adult Program 9 am – 12:00 pm (Teens also welcome) – Location: Marina Ballroom
Session 4: Drug Development & Clinical Trials Chair: Joyce Teng, MD, PhD
9:00 – 9:05 am Welcome and Announcements
9:05 – 9:20 am Empowering patients: Innovation and hope for rare skin diseases
Dayana Michel, MD, Kamari Pharma
9:20 – 9:35 am Rare Disease: Passion and Partnerships
Karen McGuire, PhD, BioMendics
9:35 – 10:15 am Medical, Scientific & Pharma Panel: Q&A about Drug Development, Clinical Trials, and other PC-related questions.
Moderated by Joyce Teng, MD, PhD, with Karen McGuire, Dayana Michel, Robyn Hickerson, Amanda Orosco, Joshua Tam.
10:15 – 10:30 am BREAK
Session 5: Learning from one another Chair: Jack Padovano
10:30 – 11:00 am Group Discussion: Practical Caring and Management Tips and Tools (Bring your trimming tools, special socks, shoes, etc. to share.)
Moderated by Jim Rittle
11:00 – 11:45 am Group Discussion: What Advice Would You Give to Children and Teens with PC?
Moderated by Rachel Folger
11:45 – 12:00 pm Pacers for PC
Janice Schwartz
12:00 – 12:10 pm Slideshow and Closing Remarks
12:15 pm LUNCH and end of meeting
