
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.”
Podcasting since 2024 • 6 episodes
Rising Up Rare
Latest Episodes
A Mother’s Fight to Save Her Son: Lincoln’s MPS 1 Journey | Cure MPS 1 Project
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-m...
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Season 1
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Episode 6
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1:32:15
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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. ...
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2:14:52
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Titus Tough - Hope For Titus #CureMPS1Project
Titus.curemps1.org Meet Titus and the Barrett-Weber FamilyTitus 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, ...
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Season 1
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Episode 3
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1:37:55
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Meet Mandy and Charlie - Hope For Charlie #CureMPS1Project
Charlie.CureMPS1.orgMeet Charlie and MandyCharlie 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 ju...
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Season 1
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Episode 2
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1:05:07
