35 Years Later, FOP Connection Continues Bringing the Community Together

From a readership of 11 in 1988 to more than 2,000 in 2023, the IFOPA newsletter has evolved to inform and connect friends across the world

Together with her sister-in-law, Anne, and fellow IFOPA founding member, Nancy Sando, Jeannie Peeper published the first edition of the FOP Connection in 1988. Back then, it looked quite a bit different from the version you’re reading today. 

“It was very basic,” said Jeannie. “It was done on a typewriter, copied and mailed out.”

Jeannie got the idea to bring people living with FOP together after Dr. Michael Zasloff gave her the names of 18 other people with FOP.

“I wanted to help end the isolation many of us felt,” she said.

Jeannie wrote to the others to gather details like names, birthdays and hobbies, and 11 of the 18 responded. Jeannie invited those that wrote back to be Founding Members of the IFOPA. Information they sent back helped create the first newsletter.

“It was a way to share everyone’s information, connect and build friendships,” she said.  

In 2010, FOP Connection moved online.

Thirty-five years later, the FOP Connection still functions in a similar manner, just on a massively different scale. A readership of 11 in 1988 has exploded to more than 2,000 in 2023.

Just like our organization, it’s remarkable to see how the newsletter has evolved to serve a growing audience yet remained committed to providing a personal connection and welcoming community for everyone.

FOP Connection provides people across the world with the latest research and clinical trial news, information about IFOPA programming, community updates, support and more to better navigate life with FOP.

It’s been so special to see FOP Connection blossom into what it is today.

Thank you, Jeannie, for creating such a wonderful way for our community to connect!

Each day throughout the month of June we're posting on social media about the IFOPA's history. It's a great way to see where we started and how those initiatives continue today. You can find us online at Facebook, Twitter, Instagram and LinkedIn.

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