Our Stories

Life with Danon disease and the power of storytelling

We created this space for people living with Danon disease to share your journey and how this disease has affected your life — to honor loved ones, raise awareness, and help others who are just learning about this disease.

Meet Nanako

I am a Japanese female patient with Danon disease that has affected me and my twin sister in very different ways.

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Meet Amy

I am one of the Co-Founders of the Danon Foundation. Danon disease came into my family’s life with my daughter, D’Layne.

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Meet Victoria

My journey with Danon disease started long before I had a name for it. In 2023, 11 years later from my previous misdiagnosis, I was finally diagnosed with Danon disease.

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Learn more about this project here, or send us a note at: contact@danonfoundation.org.