Nancy and Jack:
A Legacy of Connections and Possibilities
Nancy Sando and Jack Sholund were two of the 11 Founding Members of the International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA), a global nonprofit dedicated to supporting individuals living with FOP. FOP is one of the rarest, most disabling genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. Their friendship, built through letters, calls, and shared creativity, is a beautiful reminder of how connection can bring light to even the most challenging journeys.
Nancy, who was finally diagnosed with FOP when she was five, has dedicated her life to helping others in the FOP community. As a mentor and advocate, she has guided countless families, providing them with resources and hope. Her written guides, including one for managing caregivers and another for preparing food for those with limited jaw mobility, have become invaluable tools for individuals living with FOP. Nancy has served on numerous committees and as a Board Member of the IFOPA. She has been an outstanding leader for the organization.
Jack, who was diagnosed with FOP at the age of nine, was a gifted artist who used his talent to inspire and uplift others. His paintings celebrated his love of animals, nature, and life in Minnesota. Known for his kindness and creativity, Jack used his art to bring joy to others. His artwork served as the cover of the FOP Connection newsletter for years. Jack’s artwork also adorns Nancy’s home, especially the painting of her dog, Oreo. Each piece is a reminder of their friendship.
Nancy and Jack’s friendship is a beautiful example of the connection and support that the IFOPA fosters. Despite living hundreds of miles apart—Nancy in Michigan and Jack in Minnesota—their bond grew through letters, phone calls, and shared creativity. Jack painted Nancy’s beloved dog Oreo as a heartfelt gift after seeing photos she had shared, and Nancy often sent him Michigan fudge in return. Their friendship, spanning decades, brought comfort, laughter, and inspiration, showing how the power of connection can end the isolation that often accompanies living with FOP. Through their example, Nancy and Jack remind us of the importance of community and the transformative impact of friendship.
Though Jack sadly passed away in 2023 on his 66th birthday, his legacy of connection and creativity lives on. Nancy, who will celebrate her 66th birthday this May, continues to lead with compassion and determination, helping individuals with FOP live fuller, more connected lives.
Learn more about Jack
- Research: Advancing innovative treatments and working toward a cure for FOP.
- Connection: Ending isolation by bringing individuals with FOP and their families together.
- Support: Offering resources, mentorship, and programs that improve quality of life.
- Education: Providing tools for families and medical professionals to better understand and navigate FOP.
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