Patient Community Stories

Ashley’s father was diagnosed with Huntington’s disease when she was 15 years old; she and her brother became their dad’s primary caregivers as his symptoms progressed. She remembers finding very little information online at the time about HD and support for caregivers. She shares her story as an HD advocate to help others struggling with the challenges facing HD families. ​“I personally can’t find a treatment and I can’t find a cure – but I have a voice, and I realized that I have the ability to help people in another way.”

Learn more about their Ashley’s experience as a caregiver below.

Jesse learned that HD is in her family when her father was diagnosed with the disease and took action, turning her concern and energy into advocacy. Today, she advocated for the HD community and has served as president of her local chapter of the Huntington’s Disease Society of America. Her goal: greater support for HD families and, ultimately, a cure.

Ron was one of the first participants in our EtranaDez clinical trial in hemophilia B—and one of the early patients to be dosed with any gene therapy for this disease. He hits the gym often, lifting weights and doing other strength-training exercises.