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      Leah Leilani

      “Their openness with each other brought a first connection, even though then 8,000 miles apart, when they met through the FSHD Society Facebook group in 2009. Segroves, 51, had been living in Tucson, Arizona, for the past 20 years while Jordan, 62, was born and raised in Melbourne, Australia.”

      Ray Jordan and Cyndi Segroves may have had different upbringings and were raised in separate countries, but their passion for disability advocacy and travel, as well as their shared diagnosis of FSHD sparked a connection. Read about their story in Hawkin’s article “Couple with FSHD Relish in Shared Independence, Advocacy Work.”

      Have you met any life-long friends or lovers across the world in MD groups?

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