The Winter 2023 edition of On the Beam is here, marking the newsletter’s digital debut with an introduction to the BIG Picture art project, highlights from our Dallas conference, and a warm welcome from our incoming president, Jeri Kubicki.
“The boys and men with Lowe syndrome inspire, motivate and challenge us every day to find ways to improve their lives and our journey with them.”
Jeri Kubicki, LSA President
In This Issue
The BIG Picture Art Project
Organized by board member Theresa Haugen, this art project invited boys and men with Lowe syndrome to express themselves visually using oil pastels, with works exhibited at our 2022 Dallas conference.
Dallas Conference Highlights
Three days of learning, laughter, and connection brought families together at our eighth conference in June 2022, with Tony and Caroline Otani reflecting on how conferences have shaped their family’s journey.
Alpelisib Clinical Trial Update
Dr. Francesco Emma and Dr. Jenny Gallop submitted their small-scale clinical trial plan to the European Medicines Agency, receiving positive feedback as they continue working with stakeholders, ethical review bodies, and funders.
A New Chapter for LSA
Jeri Kubicki welcomes readers to our first digital newsletter and her new role as president, thanking outgoing president Lisa Waldbaum for seven years of service guiding the association through the pandemic.
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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