In 2021, our daughter Frances was diagnosed with a one in a billion genetic disease called DHDDS. 

Kids with DHDDS and other rare neurodegenerative diseases experience the symptoms of mental and physical decline that are usually associated with diseases like Alzheimer’s and Parkinson’s.

At age 11, Frances has already begun to experience acute symptoms that will progressively worsen. She suffers from epilepsy, full body tremors, lack of muscle control in her arms and legs, photosensitivity, migrain, nausea, and confusion. 

We are in an urgent race against the clock to help save our daughter’s life and prevent further deterioration of her mental and physical capacities while we and other DHDDS families desperately search for a cure. 

Your generous support of Cure DHDDS USA will help us fund research and development of breakthrough therapies that will lead to life-saving treatments for Frances and the 150M kids around the world living with rare diseases.