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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
Titus Tough - Hope For Titus #CureMPS1Project
Titus.curemps1.org
Meet Titus and the Barrett-Weber Family
Titus is a lively, courageous little boy whose laughter and hugs light up every room. Born on March 26, 2019, Titus was diagnosed with MPS1 just weeks after birth, altering the life his family had envisioned. Despite his challenges, Titus approaches every day with joy, resilience, and determination that inspires everyone who meets him.
The Barrett-Weber family—rooted in faith and fueled by hope—has dedicated their lives to fighting for Titus and helping other children like him. Their journey reflects strength, love, and an unwavering commitment to making a difference.
Titus’s Diagnosis
Titus was diagnosed with MPS1-Hurler Syndrome just weeks after birth, thanks to newborn screening. This rare and devastating disease affects almost every part of the body, caused by the body’s inability to break down specific sugar molecules. These molecules build up in tissues and organs, causing severe physical and neurological symptoms.
Treatment for MPS1 is complex and requires lifelong medical care, including enzyme replacement therapy, surgeries, and ongoing monitoring. While treatment can slow the disease’s progression, it cannot reverse the damage already done. For Titus and others like him, finding a cure is critical.