Zac Pyper
Australia
Sheri shares life with Zac, the challenges they face, and the joy he brings every day.
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Jansen's Stories
This community is built on shared experiences. Read stories from families living with Jansen's disease, learn from one another, and help strengthen our support network.
Stories from families
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Cade Hughes
United States
Cade's family has shared their journey in the news. Learn more about his story and advocacy.
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Little Levi
Mississippi
Levi and his family share their journey, treatments, and the community that supports him.
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Liz Rodriguez
Paraguay
Liz loves to dance and inspires her family and community with her strength.
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Michel Elizabeth Straley
St. Louis, Missouri
Michel reflects on growing up with Jansen's and the path to nursing school.
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Neena Nizar and family
United States
Learn more about the Adam boys and their family story in a news feature.
Read storyCommunity map
Families and supporters are spread across the world. Explore the community map to see where our network is growing.
Stay connected
If you would like to share a story, connect with another family, or offer support, reach out to us and we will help make the connection.
Contact the Foundation