Meet the Artist Behind Your Art

A legacy of art and advocacy

At the age of nine, Jack Sholund was diagnosed with FOP — an ultra-rare genetic condition that progressively turns muscles into bone, effectively encasing the body in a second skeleton.

For most individuals, this diagnosis is devastating and severely limits physical activity. Over the course of his life, Jack slowly lost the use of nearly all of his body, but his physical limitations couldn’t hinder his passion for art. 

“Art was his reason for getting out of bed in the morning,” said his brother, Scott Sholund.

His beloved dog, Hermione, was the subject of many watercolor paintings, as were rural Minnesota landscapes and nature scenes. Every day, he stood at his easel frozen in place for hours, painstakingly rotating his wrist centimeters at a time to bring treasured scenes to life on canvas. Once he lost the use of his right hand, he seamlessly transitioned to painting with his left with no discernible difference in his art. His detailed paintings were an astounding testimony to his perseverance in the face of severe physical limitations.

For Jack, art was also an avenue for advocacy. He used his paintings and greeting cards to spread awareness of FOP, sharing his story at art exhibits and craft fairs. In 1988, he became one of the Founding Members of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) and remained an integral part of our community. For years, he spoke at various gatherings and his artwork was the cover for our newsletter, serving as an inspiring example of what’s possible while living with FOP. 

For Jack, art was also an avenue for advocacy. He used his paintings and greeting cards to spread awareness of FOP, sharing his story at art exhibits and craft fairs. In 1988, he became one of the Founding Members of the IFOPA and remained an integral part of our community. For years, he spoke at various gatherings and his artwork was the cover for our newsletter, serving as an inspiring example of what’s possible while living with FOP. 

His spirit of resilience, cheerfulness and resourcefulness encouraged everyone he encountered. “In 40 years of daily diary entries, he never complained once,” said Scott. 

Sadly, we lost Jack on April 23, 2023 — FOP Awareness Day and his 66th birthday. Our community feels his absence acutely, but his legacy and advocacy lives on through his art. For all rare disease communities, there’s hope in numbers and we’re so grateful there’s now one more person aware of FOP today.