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Rising Up Rare
Giving Hope, Creating Action
The Cure MPS1 Project uses MPS1 family stories and the six degrees of separation to create a movement and cure MPS1. Each child’s story is a testament to strength, resilience, and hope. By sharing their journeys, we aim to bring awareness to the world and connect people in a way that leads to real action. Through the Kennedy Ladd Foundation, we are committed to raising funds for MPS1 medical research, improving quality of life for affected families, and advocating for newborn screening in every state. Together, we will find a cure.”
Rising Up Rare
The McCaleb Family - Hope For Jude #CureMPS1Project
Jude McCaleb is a joyful 9-year-old from Tennessee who loves sports, farming, and collecting sports cards. Diagnosed with MPS1 attenuated at almost eight years old, Jude has overcome countless obstacles with faith, strength, and determination. His story is one of raising awareness, inspiring hope, and spreading joy through his favorite anthem, “Raise a Hallelujah.”
Jude’s family stands by him through every challenge. His mom shares, “Our prayer was answered with his diagnosis, but it also became a new starting line. We rely on faith to guide us every step of the way.”
Jude was diagnosed with MPS1 attenuated in December 2022 after years of joint stiffness, pain, and unanswered questions. His family had spent years navigating countless tests and doctor visits, only to feel overlooked at times. “It was the most painful relief to finally get a diagnosis,” his mom explains.