The PC Project community is deeply saddened by the passing of Robert Paul Lindfors — Bob to so many of us — a devoted Board member, trusted leader, Board attorney, and friend.
Bob served the PC Project with tireless dedication. As a member of the Board and our Board attorney, he brought steady judgment, thoughtful legal insight, and a deep commitment to our mission. He believed strongly in the power of research, the strength of community, and the importance of continuing to show up for families affected by pachyonychia congenita.
What made Bob especially remarkable wasn’t just the time he gave, but the spirit in which he gave it. He was always willing to help — whether serving as Board Secretary and preparing for meetings, advising on important legal matters, weighing in on complex decisions, supporting fundraising efforts, or simply being there when encouragement was needed. He approached every task with a warm smile and a calm, reassuring presence. Much of his leadership happened quietly, behind the scenes, without any need for recognition.
Jan recently shared a story that captures Bob’s heart perfectly. During a conversation with a young teenager living with PC, Bob took the time to truly listen. He asked thoughtful questions, offered reassurance, and made her feel heard and understood. By the end of their conversation, she felt more comfortable and less alone in her journey. That was Bob — steady, kind, and genuinely present with people when it mattered most.
For Bob’s Celebration of Life, his family kindly requested that, in lieu of flowers, donations be made to PC Project. We are deeply grateful to all who chose to honor Bob’s memory in this way. Your generosity reflects the spirit of service Bob embodied and helps ensure that the work he cared about so deeply continues.
Bob understood that rare disease work takes persistence and heart. He gave both generously. His steady involvement helped strengthen our organization and guide it forward.
Beyond his service, Bob will be remembered most for his kindness. He treated everyone with respect — staff, fellow Board members, families, and partners alike. He made people feel heard. He made people feel valued. That kind of impact stays with you.
We extend our deepest condolences to his wife, Esther, and to his entire family. We feel grateful to have known Bob and to have worked alongside him. His legacy lives on in the work he helped shape and, in the community, he helped strengthen.
We will miss him very much.
