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.
“Our focus remains clear: advancing research, expanding awareness, and strengthening the connections that make this community so resilient.”
Jeri Kubicki, LSA President
In This Issue
Shining a Light on Lowe Syndrome
Families across our community came together for Rare Disease Day, sharing photos, stories, and “One Day” reflections that capture the love, resilience, and everyday victories that deserve to be seen and celebrated.
Alpelisib Research Breakthrough
Dr. Jenny Gallop shares promising new findings showing alpelisib works in eye and brain cells, not just kidney cells, and her team has successfully grown kidney cells from a Lowe syndrome volunteer for personalized testing.
Cure Lowe Foundation Update
Founder Sebastian Honoré shares the Cure Lowe Foundation’s mission to develop a gene therapy for Lowe syndrome, with promising results from kidney organoid and primate studies as the team prepares Orphan Drug Designation applications.
Research Endowment Fund
We have established a formal Research Endowment Fund in partnership with Fidelity Investments, seeded with an initial $25,000 to build long-term financial stability and sustained scientific advancement for Lowe syndrome research.
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 More
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 More
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