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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
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-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.
💜 Learn More: KennedyLadd.org
💜 Support the Cure: Lincoln.CureMPS1.org
Timestamps:
0:00 – Introduction and Emma's Story
6:45 – The Life-Changing Diagnosis Call
15:10 – Bone Marrow Transplant Journey
30:00 – Emotional Resilience and Finding Hope
45:00 – The Cure MPS 1 Project and Next Steps
#CureMPS1 #KennedyLaddFoundation #RareDiseaseAwareness #HopeForLincoln #FamilyStories