Jack Sholund suggests newly diagnosed FOP’ers take advantage of the opportunity to connect with other families experiencing the same situation.
“Don’t be afraid to seek other families that have a child or adult with FOP and share information. And whatever obstacles you or your family member may face, follow your interests that make you happy,” he advises.
When Jack was diagnosed with FOP in 1966, there wasn’t an IFOPA. There wasn’t a support group, or research moving forward, or financial assistance for accessories and equipment needed.
But then there was Jeannie Peeper, and Dr. Kaplan. Jack was pen pals with Jeannie before the IFOPA existed, yet it was 25 years after his diagnosis before he met someone else living with FOP in person.
He attended the very first FOP symposium in 1991 held in Philadelphia. “I made friendships that still continue today. It was an honor to meet Dr. Kaplan and to see how much he cares for his patients. There I learned many things that were helpful in my life.”
As one of the IFOPA’s original founders, he’s proud to see how the IFOPA has grown as a network of families who support each other. The continued educational opportunities and medical enhancements not only in the USA, but across the world, have been especially meaningful for Jack to witness.
He also sees the value in the What is FOP? Guidebook that helps families understand necessary precautions for dealing with routine activities and medical situations. Being with the IFOPA from the start is a special experience, and his talents are recognized through the beautiful cover art for the Guidebook which he painted.
Jack’s role as an optimistic advocate for FOP education and awareness strengthen the foundation of everything he admires about the IFOPA.
“It doesn’t matter if a person with FOP is five or 55, there are still things they can learn to help their life,” he reflects.
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