Open doors for families with Lowe syndrome: sponsor Walk & Roll 2026 Last year, 15 families raised more than $68,000 in our first Walk & Roll campaign. This year, we’re aiming higher, and we’re inviting businesses to walk, roll, and open doors with us as sponsors of the 2nd Annual Walk & Roll for Lowe…
Read MoreStephanie & James Share Their Walk & Roll Story
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 —…
Read MoreStipend Program Returns for 2027 LSA Conference
Mark your calendars for the Lowe Syndrome Association’s 2027 Conference, coming to Long Beach, CA, from June 25–27, 2027. We can’t wait to reconnect with you there! Financial Support to Help You Join Us We are excited to announce that our stipend program will return for the 2027 conference. This program offers financial assistance with…
Read MoreOn the Beam – Spring 2026
The Spring 2026 edition of On the Beam is here, celebrating the power of our community on Rare Disease Day, sharing exciting alpelisib research progress, introducing the Cure Lowe Foundation’s gene therapy mission, and announcing our new Research Endowment Fund.
Read MoreOn the Beam – Winter 2025
The Winter 2025 edition of On the Beam is here, and it’s filled with stories of momentum and community.
Read MoreOn the Beam – Summer 2025
The Summer 2025 edition of On the Beam is here, recapping our 18th International Conference in Cincinnati and the action it ignited across our community.
Read More2025 Conference Recap
The 18th International Lowe Syndrome Association Conference is now in the books! Thank you to all the families and friends who traveled across the U.S. and internationally to join us in Cincinnati, Ohio.
Read MoreOn the Beam – Spring 2025
The Spring 2025 edition of On the Beam is here, with research updates from around the world and a preview of our upcoming 18th International Conference in Cincinnati.
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