Patient Community Stories

Temporal Lobe Epilepsy

Huntington’s Disease

Epilepsy robbed Lena of her independence. Simple errands became a challenge, and her once-active lifestyle felt like a distant memory. But amidst the challenges, Lena found solace in the epilepsy community. Connecting with others who understood her struggles brought a sense of belonging and hope. It inspired her to learn more about epilepsy, advocate for others, and support research for a cure. Lena’s dream is for a treatment that could one day help her regain the freedom epilepsy took from her – to return to work, drive again, and enjoy life without fear.

Learn more about Lena’s experience living with TLE below.

Ashley

Huntington’s Disease Community Advocate

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 Ashley’s experience as a caregiver below.

Uni Qure Ashley C N Ireland 69 A5373 webcrop

Jesse

Huntington’s Disease Community Advocate

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.

Charles & Jessi

Huntington’s Disease Community Advocates

As an inherited disease, Huntington’s disease (HD) can have a profound effect on families. When Charles when diagnosed with HD, he and his wife Jessi made the decision to become active in the community and to do whatever they can to help raise awareness and move research forward. “Every little bit helps,” says Charles. “Keep holding on to hope and hopefully we can get some treatments soon.” You can learn more about their family’s experience below.

Hemophilia B

Rob

Hemophilia B Clinical Trial Participant

Rob always felt hemophilia B was like a big, dark cloud hanging over him. A married father of two adorable daughters, he enjoys an active life that includes doing home improvement work, one of his favorite hobbies.

Ron

Hemophilia B Clinical Trial Participant

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.

These stories are shared for educational purposes only and are not intended to discuss or imply any information about investigational therapies not approved by the FDA and where safety and efficacy have not been established. Any questions regarding a medical condition, treatment, or decisions regarding whether to participate in a clinical trial should always be directed to a healthcare professional. Each person’s individual results and situation will vary.

Temporal Lobe Epilepsy

Huntington’s Disease

Ashley

Huntington’s Disease Community Advocate

Jesse

Huntington’s Disease Community Advocate

Charles & Jessi

Huntington’s Disease Community Advocates

Hemophilia B

Rob

Hemophilia B Clinical Trial Participant

Ron

Hemophilia B Clinical Trial Participant

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