Every step we take together brings us closer to a brighter future. As we prepare for this year’s Walk & Roll campaign, we are calling on our incredible community of families, friends, and supporters to join us in making this our biggest year yet! Whether you walk around your neighborhood, gather friends at a local…
Read MoreNavigating Lowe Syndrome: How Citizen Health and Ari Became Part of Our Care Team
By Tiffany Johnson As a nurse and the parent of a child with Lowe syndrome, I sometimes joke that I’m not just a mom. I’m also a case manager, researcher, insurance specialist, and full-time advocate. Between doctor’s appointments, school meetings, insurance paperwork, Medicaid waivers, and keeping track of medical records, there’s always something that needs…
Read MoreThe Ankrom Family Turns Awareness Into Action for Lowe Syndrome
In the Northwoods of Wisconsin, one family is showing what it looks like to turn a diagnosis into determination. Rod and Michelle Ankrom learned their son Jonathan had Lowe syndrome just hours after he was born. Since then, they’ve built a life that includes Special Olympics, bocce ball, church, and an Eagle Scout badge —…
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