Reflections as we celebrate the IFOPA's 30th birthday

Reflecting on the last 30 years, Nancy Sando is amazed how quickly the time has flown by — and how much the IFOPA has grown. “We have gone from only a few founding members as a pen pal group who actually put pen to paper, to the worldwide organization it is now.”

Nancy was attending junior college when she was contacted by Jeannie Peeper. Their conversations led to the idea to form a group of “others with FOP so we could support each other and help in research.”

Countless IFOPA memories bring a big smile to her face over the past three decades. However, there’s no competition for her favorite memory. Nancy met her husband Andy Sando, who also had FOP, during the founding year of the IFOPA. 

“Besides meeting my husband of 14 years, my most memorable IFOPA moment was the 25th anniversary celebration.”

With her own flare-ups beginning at the age of five, Nancy understands first-hand the impact of FOP as a child, as well as has advice for newly diagnosed families. “Your child is a child first, who just happens to, unfortunately, have FOP. Let them experience being a child to the best of their/your ability and comfort level. During childhood, self-esteem and confidence is being built which is such a valuable tool to have regardless of age or limitation. Let them do the best they can as they will cherish the memories they are now making for their future and yours!”

As the IFOPA community continues to grow and evolve, she has two goals for the future. “I am dedicated to finding not only treatments, but also a cure so we can eliminate future diagnoses,” Nancy concludes.