<div>Our family has recently embarked on a journey we never expected—one that has already opened our eyes and hearts in profound ways. On April 16th, our sweet Luke was officially diagnosed with Coffin-Siris Syndrome (CSS)—a rare genetic disorder that affects development, speech, motor coordination, and more.
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<div>This diagnosis came after years of navigating unexplained delays, endless appointments, and daily questions about how to best support Luke. While having answers has brought clarity, it has also brought new challenges and deep emotions. Through it all, Luke’s joy, resilience, and spark remind us daily of God’s goodness and faithfulness.
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<div>We are incredibly grateful that the Coffin-Siris Syndrome Foundation, established just nine years ago, hosts an annual conference that brings together families, medical professionals, researchers, and support networks from across the country. We had the privilege of attending the 2025 “Rare in the Air” Conference in Denver, and it was truly life-giving. Next year’s conference has been announced for Orlando, Florida, and we are eager to continue learning, connecting, and growing in this beautiful community.
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<div>This event will be transformative for us—a chance to gain vital tools and resources to better support Luke, to deepen relationships with other families walking a similar path, and to grow in our ability to advocate—not just for our son, but for others impacted by CSS.
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<div>We are raising funds to help cover travel and lodging costs so we can attend the 2026 conference as a family. Any amount raised beyond what we need will be donated directly to the Coffin-Siris Syndrome Foundation, which not only funds critical research and provides much-needed support to families navigating this rare condition, but has also personally supported our family in meaningful ways.
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<div>Thank you for taking the time to read our story, and for considering being part of it.
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Maureen Urban

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Margaret Bachicha

Deborah Jacobs

Nicole and Ben Sailors

Amy Cravens

Kathy Faber

Marsha Hill

Jenny Iguchi

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Kathryn cummings

Carla Hellwege

Cheryl Jorgenson

Tina Schnell

Help Us Get to the 2026 Coffin-Siris Syndrome Conference

Help Us Get to the 2026 Coffin-Siris Syndrome Conference

Still $2,240 to go. Help us build momentum.