Don’t Google It: The Real MPS1 Story from Doctors, Parents & Pioneers
Автор: The Kennedy Ladd Foundation, Inc.
Загружено: 2025-05-31
Просмотров: 60
“Don’t Google It.”
That’s what most families are told after an MPS1 diagnosis—but what if we could change that?
In this powerful and personal conversation, Mark Dant (The Ryan Foundation), Dr. Paul Orchard (University of Minnesota), and Ryan & Allie Ladd (The Kennedy Ladd Foundation) sit down to provide honest, current, and hopeful information for families navigating an MPS1 diagnosis.
Together, they discuss:
What MPS1 Hurler Syndrome is and how it's treated today
The power of newborn screening and early diagnosis
The evolution of bone marrow transplants and enzyme replacement therapies
The promise of gene therapy and next-gen treatments
Why outdated online info causes fear—and where to turn instead
Whether you're newly diagnosed, a caregiver, or just seeking to understand more—this video is for you.
There is real hope. There is a future. You’re not alone.
📍Resources & Contacts:
The Kennedy Ladd Foundation- KennedyLadd.org
The Ryan Foundation- RyanFoundation.org
University of Minnesota MPS Program- med.umn.edu/pediatrics/programs-centers-institutes/mucopolysaccharidosis-mps-center
National MPS Society- mpssociety.org
💜 #HelpingOnePersonEveryday
Доступные форматы для скачивания:
Скачать видео mp4
-
Информация по загрузке:
