Our Stories

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

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

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.

Anton is living with Danon disease, and his mom, Jacki, shares what life is like now after Anton’s heart transplant in 2020.

Hali is a 35 year old woman living with Danon Disease. She has an identical twin sister named Ayla who also has Danon, but with different disease progression that is not as far along.

Danon disease has run through three generations of Jeannette’s family, but no one had a name for it until her young son was diagnosed. Today she advocates fiercely for him and now for herself.