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Description
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.”
7 Episodes
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In this deeply moving episode of Rising Up Rare, host Ali Lad sits down with fellow NPS1 mom and warrior, Brooke Biddle, to explore the emotional and medical journey of raising her daughter Finley through a rare disease diagnosis, bone marrow transplant, and beyond. From gut instincts that led to a life-saving diagnosis to the complex decisions every rare mom must make alone, Brooke’s story is one of raw strength, fierce advocacy, and hope in the face of impossible odds. Whether you're a newl...
What would you do if your newborn was diagnosed with a fatal rare disease at just 7 days old? In this powerful episode of Rising Up Rare, host Allie Ladd, Executive Director of the Kennedy Ladd Foundation, speaks with Emma Mizer, mom to 18-month-old Lincoln, about their raw and emotional journey through diagnosis, treatment, and hope. Together, they share the launch of the "Cure MPS 1 Project," how early diagnosis changed everything, and why community and advocacy matter now more than ever. ...
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 bec...
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 ...
Charlie.CureMPS1.org Meet Charlie and Mandy Charlie is a bright, resilient 5-year-old who, since birth, has braved countless medical procedures and challenges associated with MPS1, also known as Hurler Syndrome. Diagnosed just days after birth, thanks to Tennessee newborn screening, Charlie has undergone two bone marrow transplants, many rounds of chemo, hours of enzyme replacement therapy, and numerous hospital stays. She will face numerous orthopedic and other surgeries as she gets older a...
Hope For Blayne Facebook page- / hopeforblayne Hope For Blayne Instagram- / hopeforblayne Learn more about The Kennedy Ladd Foundation- kennedyladd.org Learn more about Blayne and the Nash Family- Blayne.curemps1.org Learn more about The Cure MPS1 Project- Curemps1.org Blayne Nash is not just another statistic. She is a daughter, a sister, and a light in the lives of everyone who knows her. She was diagnosed with MPS1 Hurler Syndrome, a progressive disorder that a...
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