The November 2024 edition of On the Beam is here, sharing the launch of our Citizen Health partnership and highlights from this year’s research symposium at Purdue.
“Together, we are stronger, more resilient, and more determined than ever to support one another and our children. Together, we will go further, faster.”
Jeri Kubicki, LSA President
In This Issue
Citizen Health Partnership
Launching January 1, 2025, our new partnership with Citizen Health gives families easier access to their medical data while helping researchers build a Lowe syndrome natural history study.
Research Symposium
Highlights from October’s International Lowe Syndrome Research Symposium at Purdue University, where scientists, clinicians, and families from ten countries gathered to advance research and therapeutic approaches.
Family Stories
Theresa Haugen shares her son Hunter’s experience attending the Purdue research symposium, where he enjoyed his celebrity status and delivered a heartfelt speech thanking researchers for their work.
Memorials
We honor the memories of Joseph (Joey) Mohr, Matthew Nuncio, and Delano Suur, three cherished members of our community whose lives inspire our ongoing mission.
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
Responses